IRSF Conference Program Final 2011 050911

8/6/2019 IRSF Conference Program Final 2011 050911

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IRSF 2011 Rett Sydrme Educati & Awareess Cerece

ResearchReality

CHEERS TO

to

May 2730, 2011 Bst, MA


2/20

Dear Cerece Attedees,

Welcme t ur 27th Rett Sydrme Educati

ad Awareess Cerece. Whether this is your rst

conerence or your twenty-seventh, we welcome you

to the single most important meeting o the year hosted

just or you: the amilies and proessionals seeking a

shared path towards healthier, more ullling lives or our

children with Rett syndrome. You have come to Boston

rom across the U.S. and rom every corner o the world

because you desire to know more, you are curious about

whats new, and you seek to meet others sharing in your

dreams owhat will be. While here, we know you will nd

the inspiration, the motivation and the know-how to be

the best parent, advocate or caregiver you can be or your

child. We have brought you together to meet with the

experts, and with each other, to accomplish these goals,

all while having a bit o well-deserved un!

Take the time to read through the program careully, and

plan your session attendances thoughtully. No doubt you

will eel hard-pressed to get to every session. We wouldnt

have done our jobs i you didnt. Dont worry! You will be

able to purchase on-demand video access to the Saturday

sessions, and audio les and handouts o the Sunday

sessions, within weeks via the IRSF website. Be sure to join

us or the wonderul Tribute Reception onsite Saturday

night. This is when we will let our hair down and lit our

glasses to Cheer and Celebrate our shared purpose, and

the progress in our commitment to bringing Research

to Reality.

While here, take time to step out and visit the sites o

Boston. Let the heart and history o this great city teach

you that the uture is ours to shape, that change and

progress will happen through the collective orce o our

shared vision, ingenuity and spirit. I you need help nding

a great restaurant, or planning outings to local points o

interest, check your registration materials or ideas, or visit

the concierge desk. Friendly IRSF sta and volunteers will

be at the Registration/Help Desk throughout the weekend

to answer questions and point you in the right directions.

Introduce yoursel to our wonderul Speakers, Exhibitors,

Board o Directors, Family Advisory Board members,

Regional Representatives and other attendees. The value

o this conerence is as much about the relationships you

will grow as it is about the tools and inormation you will

take home.

What lies behind us and what lies beore

us are but small matters compared to

what lies within us. Ralph Waldo Emerson, Author, Boston, MA

We welcme yu

ad celebrate yu

ad yur childre.

Paige Nues

Conference Director

iRsF

Stephen Bajardi

Jennier Endres

Jenni Grammer

Mary Joyce Griin

Lisa Hayden

Tony Horton, PhDJim Keller

Melissa Kuhlman

Jane Lane, RN

ORgaNiziNg

COmmittee

Kate Barnes

Larry Fallon

Irene Gladstone

Bill Johnson

Jane Joyce

Dr. Omar Khwaja

Linda McInnis

Maria McTernan

Deberah Patterson

Diane Ross

Maryann Sabo

Edith Turner


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DAY TIME SESSIon SPEAKERSESSIon

TYPE/LoCATIon

Fri-Mon

Fri: noon-8:00 pm

Sat: 7:30 am-6:00 pmSun: 7:30 am-5:30 pmMon: 8:00 am-noon

Registration/Help Desk/Speaker andVolunteer Check-In

IRSF Sta andVolunteers

Mezzanine(2nd Floor) Level

Sat-Sun

9:00 am -5:00 pm

Exhibitor and Inormation Booths:

Assistive technology, adaptive equipment,

undraising, clinics, IRSF regional

representatives and more

Exhibitors and IRSFMezzanine

(2nd Floor) Level

Sat-Sun

8:00 am -5:00 pm

Bookstore: Awareness items,

educational materials.

IRSF Sta and

VolunteersHancock

Fri-Sun

Speaker Prep Room IRSF Faireld


TYPE/LoCATIon

FriMay 27

Noon-8:00 pm Registration opens IRSF Sta Mezzanine

(2nd Floor) Level

12:15 pm- 4:00 pmLab tour: LIMITED SPACE. Pre-registration

through IRSF required. Meet in hotel lobby

near Concierge Desk at 12:15pm

Drs. Michela Fagiolini,

Cliord Wool, Scott Pomeroy,

Omar Khwaja, and Chuck

Nelson. Hosted by Childrens

Hospital Boston Trust and

IRSF

Childrens Hospital Boston: F.M.

Kirby Neurobiology Center,

Neurodevelopmental Behavioral

Core, Clinical and Translational

Study Unit (CTSU), Laboratory o

Cognitive Neuroscience Boston

6:00 pm Welcome ReceptionHosts: IRSF Board

o Directors Georgian Ballroom

7:00 pm Welcome and Orientation Address Paige Nues, IRSF Georgian Ballroom

8:00 pm-9:00 pmCrackerbarrel Breakout Sessions:

Conerence Hopes and Expectations

3 yrs and under Paige Nues Arlington, 2nd oor

4 - 7 yrsErica Robertson,

Carole CushmanBerkeley, 2nd oor

8 16 yrs Cordelia Albanese Clarendon, 2nd oor

17 yrs and over Cliord and Judy Fry Georgian, 2nd oor

Grandparents Jennier Endres Statler, 2nd oor

Rettnetters and FacebookersShirley Hurlburt,

Cathy MerrillFaireld, 2nd oor

Spanish Speakers Maggie Wurm Stuart, 4th oor

Proessionals Evie Lynn Swan White Hill, 4th oor

CDKL5 Katheryn Elibri-Frame St. James, 4th oor

IRSF 2011

Cerece Prgram FRiday, may 27 mONday, may 30 Please check registration/help desk or conrmed session times and room assignments, all session times

are Eastern Time Zone. See program back cover or conerence oor plan. Program is subject to change.


4/20


TYPE/LoCATIon

Sat

May 28

7:15 am-

12:30 pmRespite Rooms Open

Lexington and Newbury,

4th Floor

Morning7:30 am

Understanding RTT and

other

MECP2 Disorders

Alan Percy, MD, Director UAB

Rett Center at the University o Alabama

Civitan International Research Center

Imperial Ballroom

General Session and

Live Webcast

8:30 amParents Experiences with

Genetic Testing or

Rett syndrome

Christine Delaney, MS,

Genetics Counselor

Imperial Ballroom

General Session and

Live Webcast

8:45 am IRSF Welcome AddressKathryn Kissam, IRSF Board Chairman, and

Steve Bajardi, IRSF Executive Director

Imperial Ballroom

General Session and

Live Webcast

9:15 am

ExhibitorArena

Open

9:15am

5:00pm

Current State o

Translational Research

Tony Horton, PhD, Chie Science Ofcer,

IRSF,Jefrey Neul, MD, PhD, Baylor Collegeo Medicine, and Omar Khwaja, MD, PhD,

Director Rett Syndrome Program, Childrens

Hospital Boston

Imperial BallroomGeneral Session and

Live Webcast

10:00 amKeynote Motivational

Address:

YES YOU CAN

Dick Hoyt o amed Team Hoyt

Imperial Ballroom

General Session and

Live Webcast

10:30 am Rereshment Break and Exhibitor Arena

10:45 amWhat Goes Right

with Her Brain

Aleksandra Djukic, MD, PhD, Director, Rett

Syndrome Center, Albert Einstein College o

Medicine at Monteore

Imperial Ballroom

General Session and

Live Webcast

11:30 amCommunication

at All AgesSusan Norwell, MS Ed

Imperial Ballroom

General Session and

Live Webcast

12:15 pm Lunch (on your own) and Exhibitor Arena. Respite rooms closed

1:30 pm-5:45 pm

Respite Rooms OpenLexington and Newbury,

4th Floor

Aternoon1:45 pm

Sibling PanelBrian Skotko, MD, MPP, Clinical ellow in

genetics, Boston Childrens Hospital

Imperial Ballroom

General Session and Live Webcast

2:30 pmNeurology:

Epilepsy

Ann Marie Bergin, MB MD, BCH, BAO,Epilepsy Specialist, Rett Center, Childrens

Hospital Boston

Imperial Ballroom


3:00 pmThe Importance o

Therapies and

Rehabilitative Medicine

Donna L. Nimec, MD, Pediatric Physical

Medicine & Rehabilitation Specialist,

Childrens Hospital Boston

Imperial Ballroom


Cerece PrgramFRiday, may 27 mONday, may 30Please check registration/help desk or conrmed session times and room assignments all session times


4


5/20

DATE TIME SESSIon SPEAKERSESSIon

TYPE/LoCATIon

Sat

May 283:30 pm

ExhibitorArena

Open

9:15am

5:00pm

Rereshment Break and Exhibitor Arena

3:45 pm Endocrinology

Ingrid A. Holm, MD, MPH, Director,

Phenotyping Core, Program in Genomics,

Divisions o Genetics and Endocrinology,

Children's Hospital Boston

Imperial Ballroom

General Session and

Live Webcast

4:20 pm GastroenterologyKathleen Motil, MD, PhD

Pediatrician and Gastroenterologist, Blue

Bird Rett Center BCM, TCH

Imperial Ballroom

General Session and

Live Webcast

5:00 pmWell Child and Adult

Care Overview

Jane Lane, BSN, RN, University o Alabama

and IRSF

Imperial Ballroom

General Session and

Live Webcast

5:45 pm Respite Rooms Close Lexington and Newbury, 4th Floor

5:45 pm Dinner (on your own)

7:30 pm Tribute Reception Hosted by IRSF Georgian Ballroom

Failure is impossible. Susan B Anthony

IRSF 2011

Cerece Prgram FRiday, may 27 mONday, may 30Please check registration/help desk or conrmed session times and room assignments all session times


27 Years Carig

2011 Cheers to Research to RealityBoston, MA

2010 Aint No Mountain High EnoughColorado Springs, CO

2009 Celebrating the Torch WithinLeesburg, VA

2008 Together We Are BetterChicago, IL

2007 Reach Me, Teach MeAtlanta, GA

2006 Bridges o HopeSan Francisco, CA

2005 Trails to DiscoverySan Antonio, TX

2004 Believe in Better DaysBaltimore, MD

2003 Ship Shape or CaregiversBahamas

2002 EmpowermentChicago, IL

2001 PossibilitiesWashington, DC

2000 Hitting the JackpotLas Vegas, NV

1999 Meet Me in St. LouisSt Louis, MO

1998 Grass RootsCharleston, SC

1997 Keeping AfoatBahamas

1996 Spirit o 96Boston, MA

1995 A Road Less TraveledMinneapolis, MN

1994 A Decade o CaringChicago, IL

1993 Stepping StonesSan Diego, CA

1992 New HorizonsSan Diego, CA

1991 Up, Up and AwayDenver, CO

1990 Family TiesWashington, DC

1989 Hope or TomorrowWashington, DC

1988 Rett Families ConerenceHouston, TX

1987 RS Diagnosis & ManagementHouston, TX

1985 (November) Rett: A New SyndromeBaltimore, MD

1985 (January) No Longer AloneBaltimore, MD


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DATE TIME SESSIon

Sunday

May 29

RESEARCHCOMMUNICATION

AND SCHOOL

MEDICAL ISSUES

AND THERAPIES

FAMILY

FOUNDATIONS

FUNDRAISING AND

ADVOCACY

7:45 am-

12:30 pmRespite Rooms Open Lexington and Newbury, 4th Floor

8:00 am

What is DNA?

(lab demo limited to a

maximum 25

attendees) Tony

Horton, PhD, Chie

Science Ofcer, IRSFARLINGTON

Emergent Literacy

and Communication

Susan Norwell, MS Ed

STATLER

Conductive

Education:

A Therapeutic

Approach

Eleonora Tamasne

MA, QCS, QTS, ETBERKELEY

Entender RTT y Otros

Trastornos MECP2

en espaol Alan

Percy, MD, Director

UAB Rett Center at the

University o Alabama

Civitan International

Research Center,

Maggie Wurm, IRSFBilingual Representative

interpreting

(90 minutes)

CLARENDON

9:00 am

Exh

ibitorArenaOpen

9:15am

5:00pm

What Happens in

Rett Syndrome at a

Molecular Level:

Epigenetics and

Assay Development

Christopher Wynder

PhD, Schulich School o

Medicine, University

o Western OntarioARLINGTON

Simple Solutions or

Daily Problems

Karen Patterson, Special

Educator, Biloxi, MS

STATLER

Physical Therapy

Barbara Deluca, Physi-

cal Therapist, Cotting

School, MA

BERKELEY

Fundraising

How-To

WorkshopJennier Endres, IRSF

and Jenni Grammer,

IRSF

PLAZA BALLROOM

10:00 am Rereshment Break and Exhibitor Arena

10:15 am

What Happens in

Rett Syndrome at

a Systems Level:

Neurobiology o RTT

Michela Fagiolini, PhD,

F.M. Kirby Neurobiol-

ogy Center, Childrens

Hospital and Harvard

Medical School

ARLINGTON

Mid Tech Usage and

the Literacy Assess-

ment Susan Norwell,

M.S. Ed. and Judy

Lariviere, M.Ed., OTR/L,

Communication Special-

ist, Rett Clinic, Oakland

Childrens Hospital

STATLER

The Maturing

Woman with Rett

Syndrome: From

Puberty to

Menopause Jane

Lane, BSN, RN,

University o Alabama

and IRSF

BERKELEY

Expression and

Movement

Through Dance

Pro. Carlinhos

Faustini, PEAMA, Brazil

GEORGIAN BALLROOM

Advocacy 101

Stephen Bajardi,

Executive Director, IRSF

CLARENDON

11:15 am

Researcher

Panel Q&A

Drs. Horton, Percy,

Neul, Wynder, and

Fagiolini

ARLINGTON

Making Eye Gaze

Technology a Reality:

The Road rom Trials

to Conversations

Judy Lariviere, M.Ed.,

OTR/L, Communication

Specialist, Rett Clinic,

Oakland Childrens

Hospital (90 minutes)

STATLER

In Common: Music

(Therapy)

Donna Chadwick,

Music Therapist, MA

BERKELEY

Special Needs

Wills and Trusts

Donald Freedman,

Rosenberg, Freedman

& Goldstein LLP and

John W. Nadworny,

CFP(r), Bay Financial

Associates LLC

PLAZA BALLROOM

6

Cerece Prgram FRiday, may 27 mONday, may 30 Please check registration/help desk or conrmed session times and room assignments all session times



7/20

IRSF 2011



DATE TIME SESSIon

Sunday

May 29

ExhibitorAren

a

Open

9:15am

5:00pm

RESEARCHCOMMUNICATION

AND SCHOOL

MEDICAL ISSUES

AND THERAPIES

FAMILY

FOUNDATIONS

FUNDRAISING AND

ADVOCACY

Lunch

12:30 pm

1:30 pm

Lunch served in IMPERIAL BALLROOM and Exhibitor Arena open (Respite Rooms closed during lunch)

12:40 pm

1:30 pm

Regional Representative Meeting 12:40 pm 1:30 pm with Jennier Endres and Lisa Hayden

PLAZA BALLROOM

1:30 pm-

6:00 pmRespite Rooms Open Lexington and Newbury, 4th Floor

Ater-

noon

1:45 pm

Ways to Make it

Go Right: A Look

at IGF-1 and otherSmall Molecules

Mriganka Sur, PhD,

Paul E. Newton

Proessor o

Neuroscience Head,

Dept o Brain and

Cognitive Science, MIT

and Omar Khwaja,

MD, PhD, Director Rett

Syndrome Program,

Childrens Hospital

Boston

ARLINGTON

IEP Panel Discussion:

Your Real-Lie IEPs

(90 min)

STATLER

Nutritional Manage-

ment o Children

with Rett Syndrome

Gail Seche, MMSc, RD,

CSP, Rett Syndrome

Clinic, Oakland Chil-

drens Hospital, CA

BERKELEY

Transition toAdulthood

and Community

Programs

Donald Freedman,

Rosenberg, Freedman

& Goldstein LLP and

Alan K. White

Director o Residential

Alternatives TILL, Inc.

(90 min)

PLAZA BALLROOM

2:45 pm

How to Search Out

and Critically Read

Research Articles

Kate Barnes, BSc,

Research Coordinator

and Heather OLeary,

BSc, Biomedical

Engineering Research

Scientist, Rett

Syndrome Program,

Department o Neurol-

ogy, Childrens HospitalBoston

ARLINGTON

To Sleep,

Perchance to Dream

Sleep Disorders in

Rett Syndrome

Judy Barrish, RN, Blue

Bird Rett Center Baylor

College o Medicine

BERKELEY

Fostering Friendships

Diane Ross, MS, LCPC,

Educator,Therapist

and Parent

CLARENDON

Strollathon:

The IRSF Signature

Fundraiser

Jennier Endres, IRSF

and Jenni Grammer,

IRSF

EXETER

Clinical Features and

Current Research

CDKL5 and Atypical

Rett Syndrome DavidFrame, PharmD, IFCR

GEORGIAN BALLROOM

3:30 pm Rereshment Break and Exhibitor Arena

3:45 pm

Accessing the

General Education

Curriculum

Mick Ross, MS and

Diane Ross, MS, LCPC,

Educators and Parents

STATLER

Creating a Vision

Elaine Rabbitt,

Federation or Children

with Special Needs

ARLINGTON

Dads Panel

GEORGIAN BALLROOM


8/20

DATE TIME SESSIon

Sunday

May 29

ExhibitorArena

Open

9:15am

5:00

pm RESEARCH

COMMUNICATION

AND SCHOOL

MEDICAL ISSUES

AND THERAPIES

FAMILY

FOUNDATIONS

FUNDRAISING

AND ADVOCACY

4:45 pm

How Do Clinical Trials

Happen? An Inside

Look at the IGF-1

Clinical Trial - Omar

Khwaja, MD, PhD,

Director Rett Syndrome

Program, Chidrens

Hospital Boston

GEORGIAN BALLROOM

5:30 pmFarewell and Closing Remarks Paige Nues, IRSF

GEORGIAN BALLROOM

6:00 pm Respite Rooms Close Lexington and Newbury, 4th Floor

Monday

May 309:00 am

Crackerbarrel Breakout Sessions: Conerence Learnings and Takeaways

STATLER

12:00 pm Help Desk and Bookstore Close See You at World Rett Syndrome Congress, New Orleans, June 2012!

8




9/20

Crackerbarrels are inormal chat groups. There wontbe any crackers, but its guaranteed to be a barrel oriendship and warmth. Gather in groups by your childs

age, as Grandparents, Proessionals, Spanish speakers, or as

caregivers o children with a CDKL5 mutation. Or, you may

want to join the Rettnetter/Facebooker Crackerbarrel to

give a hello and a hug to your online riends. This is a

wonderul time to meet others in a casual atmosphere to

talk things over. Move rom one group to another i you

would like to.

Bkstre in the Hancock Room is where youll nd tee shirts,hats, Handbooks, and lots o other Rett Syndrome awareness

items o interest. Heres your chance to pick up a souvenir or

nd a git or that special teacher, caregiver or loved one.Checks and credit cards are welcome.

Help ad directis can be ound at the Registration Desk orthe Bookstore. IRSF Sta will be wearing IRSF name tags and

are ready to assist you. Board Members, Regional

Representatives, Family Advisory Board members and

Speakers will be also be identied by name badge or colored

ribbons that identiy their roles throughout the meeting.

Dont hesitate to ask; thats what were here or!

Sessis, on a tender note, are only or adults and childrenover 12 who have paid a conerence ee. Please wear your

conerence badge at all times. The sessions are proessionallytaped and require minimum noise level in meeting rooms.

Please close doors quietly with consideration or speakers

and other attendees and limit noise in hallways outside

the session rooms. Please set cell phones to silent or

vibrate mode.

Sessi Recrdigs ad Sessi Haduts Each session willbe proessionally recorded. Video les (MP4s) o the Saturday

sessions and MP3s (audio les) o the Sunday sessions will

be available or purchase ater conerence on the IRSF online

store ound at www.rettsyndrome.org or a per-session price

with a group discount or the whole set. These are best paired

with session slides and handouts. We will post all the materialsthat our speakers can permissibly share to the website within

a ew weeks ater conerence.

Diig ptis are plentiul in Boston. Many wonderulrestaurants at all price ranges are onsite or within steps o

the Boston Park Plaza Hotel. Check your registration packet

or a listing o avorites by our Boston-area parents, or with the

hotel Concierge. I you paid a FULL REGISTRATION or have a

SCHOLARSHIP, please enjoy a light reception Friday evening;

Continental Breakast and morning/aternoon break service

Saturday and Sunday; coee, dessert and cash bar at the Tribute

Reception on Saturday night (ticket required, included in your

registration materials); and lunch on Sunday (ticket required,included in your registration materials). ONE DAY REGISTRATION

includes Continental breakast and morning/aternoon break

service or that day. In addition, one (1) Tribute Reception ticket

is included or the one-day Saturday attendee. One (1) lunch

ticket is included or the one-day Sunday attendee. Please keep

track o your Tribute Reception and Sunday lunch tickets as

they are non-replaceable, or pass to a riend i you wont be

attending as they are non-reundable.

Respite is available or a limited number o children and adultswith Rett Syndrome by pre-registration and or a nominal ee

in the Lexington and Newbury Rooms on the 4th oor.

Visitations open only to parents/caregivers o the childrenregistered in Respite and authorized volunteers. Check with

the registration desk or details. We are pleased to oer this or

the 2nd time ever at our annual conerence, and appreciate

your understanding and eedback while we develop this

onsite support system.

Evaluati Frms are important to help us improve ourconerence year-over-year. Please complete the conerence

and session evaluation survey orms online. The link will be

emailed to you ater conerence.

Irmati

Registrati opens on the Mezzanine (2nd Floor) Level at noon on Friday. Pickup your registration materials, badge, bag, photobutton, Tribute Reception ticket and Sunday lunch ticket. Dont orget to drop o a Rae item, and/or buy Rae tickets.

IRSF 2011

Patience and perseverance have a magicaleect beore which difculties disappearand obstacles vanish.John Quincy Adams


10/20

Special Evets

Tribute Recepti Saturday night in the Georgian Ballroom(Mezzanine 2nd Floor Level) is our chance to pay tribute to

our special angels, and to thank the many people who have

made our success possible. The highlight o the evening is a

music video tribute to our girls. You are guaranteed to enjoy itall, and there will be un or everyone. Everyone has a chance

to win in our exciting Boston Conerence Rae, or just settle

in, enjoy the special entertainment; take time to chat with old

riends and meet new ones. Tickets are included with your

paid ull conerence ee, and additional guests are invited to

purchase tickets at the Registration Desk or $15 per person

while available. Our girls and women with Rett Syndrome

are welcome at no charge. Coee and dessert will be served.

Cash bar.

Bst Cerece Rafe You are sure to nd somethingyou cant live without in the collection o items up or Rae!

Shop the Rae items on display Saturday at the Rae

tables throughout the Mezzanine 2nd Floor Level hallways.

Heres how it will work this year: purchase Rae tickets at

the Registration desk or rom one o our wandering ticket

selling volunteers throughout the day Friday and Saturday,

then drop your ticket(s) into the box o the item(s) you

hope to win. The more tickets you put in the box, the better

your chances o winning that item! Rae winners will be

announced Saturday night at the Tribute Reception. All

proceeds benet Rett Syndrome!

Additial Prgrams ad Activities

Childres Hspital Bst Lab Tur: 360 Degree Apprach t

Rett Sydrme Basic t Traslatial ad Cliical StudiesDrs. Cliord Wool and Scott Pomeroy will rst introduce

the F.M. Kirby Neurobiology Center and the Neurology

Department respectively. Drs. Fagiolini, Khwaja and Nelsonwill then summarize their highly integrated collaborative

eort in understanding and treating Rett Syndrome. A brie

visit to the F.M. Kirby Neurobiology Centers laboratories

and the up-coming Neurodevelopmental Behavioral Core will

ollow. We will then transer to the Clinical and Translational

Study Unit (CTSU) to see ongoing RTT clinical trials and

nally to the Laboratory o Cognitive Neuroscience and

watch ongoing research. Light rereshments will be oered.

Transportation between the hotel and the hospital and within

the hospital acilities will be provided. LIMITED SPACE.

Pre-registration through IRSF required. Friday afternoon

Exhibitrs Visit the Exhibitor Arena in the Mezzanine 2nd Floorlevel hallways or a hands-on look at communication devices,adaptive equipment, and more throughout Saturday and

Sunday. Enclosed in your registration packet is an Exhibitor

Arena Stamp Card. Visit an Exhibitor, get a stamp. Fill your

Stamp Card, turn it in at the Registration Desk, and you will be

entered to win a special prize drawing at the Sunday Closing

session. SaturdaySunday

Helpig Hads Keepsake Ad Jural Look through theincredible journal enclosed in your registration packet and read

the heart-warming tributes and messages o hope submitted

by Rett Syndrome amilies and riends. This is as close as we

come to a Rett Syndrome Yearbook we hope you enjoy!

10


11/20

Sessi Descriptis

Accessig the Geeral Educati Curriculum - Mick andDiane Ross believe that all girls with Rett Syndrome are

capable o learning and benetting rom having access to a

wide variety o curriculum and educational experiences. This

session is about adapting the regular education curriculumor girls with Rett syndrome, preschool through college. A

variety o strategies and practical approaches to accessing

and adapting regular education curriculum to meet the

needs o girls with Rett Syndrome will be presented.

Sunday afternoon

Advcacy 101 Steve Bajardi, IRSF Executive Director, willconduct an inormal discussion on the state o advocacy in

Washington DC and within the NIH, the movement away rom

earmarks, and the strategies we anticipate will be necessary to

secure Rett Syndrome rare disease translational research

unding. Sunday morning

Cliical Features ad Curret Research: CDKL5 ad Atypical

Rett Sydrme Mutations in the X-linked cyclin-dependentkinase-like 5 (CDKL5) gene have been identied in patients

with Rett syndrome, with the predominate eatures o

generally intractable early-onset seizures and mental

retardation. Overall, the characteristics o CDKL5 are similar to

Rett syndrome, however most patients diagnosed with a

CDKL5 mutation do not have a MeCP2 mutation. This program

will describe characteristics o patients aected with CDKL5

mutations, and will also describe current research examining

the role o CDKL5 in these disorders. Target Audience: amilies

o children with a known CDKL5 diagnosis; amilies o children

with clinical Rett Syndrome who do not have a MeCP2mutation, or who have prevalent seizures; all others interested

in learning more about CDKL5 and current research.

Sunday afternoon

Cmmuicati At All Ages Susan Norwell, MA, Spec. Ed.,will motivate and encourage parents, teachers, therapists,

caregivers, and amily members with videos and stories o

girls/women using their brains to communicate in ways that

reveal their ideas, opinions and wonderul sense o humor.

Susan is thrilled the science has caught up with the reality she

has been a part o the last 25 years! As you view the videos

you will see ABILITY not disability shine through and be able

to see a path that includes true communication or those

struggling with Rett. Her hope is that it will inspire all

stakeholders to bring their best to the table or the girls they

serve and to assume the competence they so richly deserve!

Saturday morning

Cductive Educati is a comprehensive, educationalapproach or children with motor challenges ocused on

active participation. Conductive Upbringing o a child with

special needs, expectations and consistency. The role o

Rhythmical Intention in motor planning regarding apraxia,

dyspraxia. How can a child be taught throughout the day?

Recognizing small, but important details that will have huge

impact on development. Goal-directed activities. Integrated

program at home. Emphasis on parent education. Is it just

repetition orpurposefullychanging places and positions? Accessible environmentand equipmentto acilitate learning in

dierent settings. Ongoing observation to maximize potential

learning in order to ensure progress. Experiences are based on

working with girls with Rett Syndrome between

2 - 8 years o age. Sunday morning

Creatig a VisiThis is a participatory workshop duringwhich parents are guided to transorm their hopes and

dreams into a written vision or their childs uture. Handouts

assist participants in breaking down their visions into skill

categories. The group will engage in discussion about how

these skills can be integrated into their childs IEP

development. Sunday afternoon

Curret State Traslatial Research Trials Dr. AntonyHorton, Dr. Jerey Neul and Dr. Omar Kwjaja will together give

a State o the Science address, outlining strategic directions

and current progress in Rett Syndrome research which is

leading to the development and testing o new treatments,

and clinical trials. Saturday morning

Dads Pael In this session, you will hear a select panel oDads talk about their sometimes unique perspective on

coping with the diagnosis and beyond, balancing work-lie,

acing adolescence/adulthood with their daughters, and the

demands o being a special ather. Sunday afternoon

Emerget Literacy ad Cmmuicati We need to rmlyplant our eet within a literacy ramework that supports

literacy learning not only due to No Child Let Behind but

due to its research- based correlation with communication

development. This session will ocus on girls/women who are

at the beginning o the literacy continuum. We will lay the

groundwork or the rst-step work that ensures engagement,

communication learning and literacy development. We

will look at the rst block in the Building Block Model by

Patricia Cunningham. Come and learn, laugh and see videos

o girls engaged in real literacy activities. No worksheets or

identiying colors will be allowed!!! Sunday morning

Edcrilgy: Be Issues ad their Treatmet i

Rett Sydrme Decrease in bone mass has been reported inRett syndrome. Fracture rate is increased in Rett Syndrome

patients. This issue is part o a larger topic that relates various

neurologic actors to bone cell unction. This talk will review

these issues, discuss the diagnosis o bone deciency in Rett,

and will discuss the indications or, and methods o treatment.

Saturday afternoon

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Eteder RTT y otrs Trastrs MECP2 Esta sesin esespecialmente ideal para los recin diagnosticados, el recin

llegado o para repasar los conceptos bsicos del sndrome

de Rett. Vamos a cubrir en alto nivel: un poco de historia, las

tasas de incidencia, los criterios de consenso para hacer el

diagnstico clnico de clsico o atpica el sndrome de Rett,

las hembras y los machos, la longevidad, la gentica y el gen

MECP2, adems de problemas mdicos comunes. El doctor

Percy presentar en Ingls, y IRSF bilinge Representante y el

sndrome de Rett padre Maggie Wurm se traducir al Espaol

el domingo por la maana. Sunday morning 90 minutes

Expressi ad Mvemet Thrugh Dace In this session, avisiting proessor and choreographer rom Brazil will share

through lecture, video and possibly a perormance with

Isabela (RTT), his 4-year experience in working with his rst

student with Rett syndrome. Based on experiences with

autistic children, Down syndrome, and cerebral palsy, he will

highlight his emphasis on capabilities by means o passive

movement, where Isabela receives input and responds

through stiness or muscle relaxation as the movementitsel asks. He respects her eatures o the syndrome such

as scoliosis, gastrostomy, stereotyping and others, seeking

an artistic touch to the basic movements turning them

into choreography. Isabela responds positively, showing

through her eyes and smile that she understands and enjoys

the program. He works with several choreographies where

mental and motor abilities are challenged. Isabela has also

begun participating Peama, an initiative o the Department

o Education and Sports o Jundiai, Brazil, whose goal is to

include people with disabilities through the practice o motor

activities, sports and recreation. Sunday morning

Fsterig Friedships Toddlers To Teens This session willprovide ideas to assist parents in ostering riendships or

their girls with Rett syndrome. Strategies or adapting games,

crats and activities to engage the girls with their typically

developing peers in age appropriate games and activities

will be provided. This session also explores the commitment

and time that it takes to assist girls with Rett Syndrome in

obtaining and maintaining lielong relationships.

Sunday afternoon

Fudraisig Hw-T Wrkshp Learn the important basicso successul undraising in this one hour session. Leave

eeling knowledgeable and energized to begin your own

event to raise the much needed unds to support IRSFsmission to und research, support amilies and increase

advocacy and awareness. This session will help you to narrow

down the type o event you may choose to hold, explain

how to get started and provide strategies to ensure success.

Browse the many sample invitations, t imelines, literature,

olders and more that IRSF has to oer and leave with the

condence and knowledge o the resources that are available

to you to ensure successul undraising. Sunday morning

Gastreterlgy An overview o common GI issues towatch or in Rett syndrome, rom swallowing to GERD and

constipation, along with recommended treatments and

interventions. Saturday afternoon

Hw t Search out ad Critically Read Research ArticlesNavigating the internet in search or accurate inormation

about clinical research can be a challenge. Even though there

is a wealth o inormation available, there is very little guidance

when it comes to interpreting its meaning and how it may relate

to your child. Join us as we describe three broad categories

o Rett Syndrome research: basic, clinical, and translational. In

this discussion we will teach amilies where to search or and

how to critically interpret research articles. Together, we will

review exemplary papers and explain what makes them so

signicant and how they have contributed to a more complete

understanding o Rett syndrome. Sunday afternoon

IEP Pael Discussi:Your Real-Life IEPs Join us as apanel o proessional experts (a physician, communication

specialists, OT, PT, MT and parent advocates) review aselection o real-lie IEP goals rom students with Rett

Syndrome rom across America, rom the early school years

to middle and high school years. Whether ambulatory or

non-ambulatory, a healthy child or medically ragile, in a

special-day class or ull-inclusion or somewhere in between,

there is a template or an enriched learning environment that

can equal success or all o our students o varying needs and

abilities. Sunday afternoon 90 minutes

I Cmm: Music (Therapy)This presentation will addressthe commonalities among girls who have Rett Syndrome

and their signicant relationship with music. It provides a

oundation o all you want to know about music therapyand sets orth a solid rationale or Music Therapy (MT) being

included/unded as a standard best practice treatment or

Rett syndrome. Photos, anecdotes, and examples o many

MT methods will bring the process to lie. Sample goals

and objectives rom actual Individual Educational Plans

(IEPs) illustrate customization o MT or school age students;

post-IEP MT service will also be represented. In Common:

Music (Therapy) is appropriate or a general audience.

Sunday morning

Makig Eye Gaze Techlgy a Reality: The Road from Trialsto Conversations Getting support to und an eye gaze system

or girls or young women with Rett Syndrome (RTT) continuesto represent an ongoing challenge given decisions are made

based on the outcome o an eye gaze trial with a specic

device. Once a girl or woman receives her eye gaze system, it

is oten difcult to know where to start. This session will cover

eye gaze technology rom how to conduct successul eye

gaze trials through to building various types o vocabulary

pages that support a girl or young woman with RTT in using

her eye gaze system in conversations with communication

partners at home, school, and in the community. A range

o communication-based pages that support natural and

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spontaneous interactions across various eye gaze systems will

be highlighted. In addition, specic set-ups, congurations,

and videos o girls real lie experiences while using eye gaze

systems will be shared. Recommendations or supporting a

girls access to and exploration o a communication devices

preprogrammed language-based system to enhance her

conversations using novel expressions will also be shared.

Strategies or training communication partners to engage agirl or woman in conversations using her device, while also

acknowledging her other means o communication, will be

discussed. In addition, various ways to use an eye gaze system

as an integral part o literacy instruction will be highlighted.

Audience: Preschool, Elementary School, Middle School, High

School and Adult. Sunday morning90 minutes

Mid Tech Cmmuicati Usage ad Literacy AssessmetsThis session builds on the 8am Emergent Literacyand

Communication session to demonstrate how to move girls/

women rom oundational work o The Building Block Model

into the Four Block Model that delineates learning to read

in the more traditional sense. Making word activities will bedemonstrated to support learning the important reading

skill o decoding. Guided reading and writing options will

be demonstrated. Judy will share her important work with

assessing girls/women to nd their reading level. She will

also share videos to show how girls/women, rom a range

o communication abilities, can successully use various

iPad apps or communication. Come and see videos o girls/

women reading and leave inspired to include reading as

an important and reachable goal or your loved one and/or

student. Just a reminder: still no worksheets or identiying

colors will be allowed! Sunday morning

neurlgy:Seizures and EpilepsyDr. Bergin will discuss theclinical characteristics o seizures and epilepsy. She will discuss

the recognition o seizures and non-epileptic events in Rett

syndrome, their diagnosis and dierentiation, including the role

o investigations and their interpretation. She will also discuss

treatment o seizures and epilepsy, including the goals o

treatment, limitations and complications o treatment, as well

as reviewing the range o both traditional and non-traditional

treatments available. Saturday afternoon

nutritial Maagemet Childre with Rett Sydrmewill include discussion o nutritional concerns such as growth,

eeding problems, hydration, nutritional deciencies and

nutritional interventions such as g-tubes, seizure diets,supplements and high calorie diets. Questions and Answer

time will be provided. Audience: Parents and caregivers o

children with Rett Syndrome. Sunday afternoon

Parets Experieces with Geetic Testig r Rett Sydrme- Christine Delaney will present the results o her Masters

thesis research study in which she surveyed parents o

children with Rett Syndrome about their experiences with

genetic testing. The purpose o this study was to assess the

impact that the introduction o genetic testing or RTT has

had on the parents and to understand what actors motivated

parents to obtain or not obtain genetic testing.

Saturday morning

Physical TherapyThe session will cover the importanceo Physical Therapy and incorporating healthy movement,

postures and positioning into the liestyles o those diagnosed

with Rett Syndrome. Sunday morning

Researcher Pael Q&A Our speakers rom the morningResearch sessions will stay to answer your questions as a

panel discussion in a less ormal program ormat.

Sunday morning

Siblig PaelThrough an interactive panel discussion,parents will have a chance to hear what questions, needs,

and concerns are oten raised by brothers and sisters, young

and older, who have a sister with Rett syndrome. Parents

will come away with practical answers to commonly raised

questions. Saturday afternoon

Simple Slutis r Daily Prblems Our girls are anything butsimple but that does not mean that meeting their needs or

understanding their wants has to be difcult. Class activities

and materials used to spark communication will be shared.

This session will also take you through basic wants and

needs to demonstrate techniques or teaching children how

to let you know that they are in pain and where the pain is.

This session will have book adaptations on hand to explore,

and the presenter will have stories that her student with

Rett Syndrome wrote on display. She will also share how her

student has begun creating her stories on an iPad, which is

more accessible and easier to travel with. All o these topics

are useul or parents, caregivers, teachers, therapists, and

medical sta. The world seems to be catching up with our

children and we must help them along. Sunday morning

Special needs Wills ad Trusts In this session, we will coverin an uncomplicated manner recommendations on how to

prepare nancially, and how to have your amilys wills and

trusts set up, so as not to disqualiy your loved one or benets

in the uture. Sunday morning

Strllath: The IRSF Signature Fundraiser This roundtablediscussion is perect or anyone that has held a Strollathon or

thinks they may want to. Attendees will have a chance in this

small group setting to ask questions about where to begin

or a rst-time event, how to grow an existing Strollathon, or

just listen and learn rom a ew experienced Strollathon event

chairs. Sunday afternoon

T Sleep, Perchace t Dream:Sleep Disorders in RettSyndrome We will discuss the average amount o sleep

requirements or Non-Rett individuals o various ages, the

multiple reasons or nocturnal sleep disruption associated

with Rett syndrome, a check list o pathological problems

that should be considered, and nally a behavior modication

program or those girls who just want to get up at 2:00 AM

and have the whole household join her party.

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The Imprtace Therapies ad Rehabilitative MedicieThe importance o therapies in Rett Syndrome cannot

be overstated. Although RTT is not degenerative, it is

progressive. A consistent, inormed therapeutic program

overseen by a multidisciplinary therapy team in the clinic,

at school, and at home can maintain and in cases improve

skills. In this presentation, we will discuss the optimization o

unction through the combined use o medications, physical

modalities, physical training with therapeutic exercise,

movement & activities modication, adaptive equipment,

assistive devices, and orthoses (braces). Saturday afternoon

The Maturig Wma with Rett Sydrme:From Puberty toMenopause This presentation is a discussion o issues that

girls with Rett Syndrome and their amilies ace as they

mature into womanhood. Particular topics will include

the normal stages o puberty, menarche, and menopause,

seizures and antiepileptic medication issues that may arise

with puberty and throughout maturity, medications and

procedures or menstrual management, health maintenance

recommendations or special needs women, behavioral andsocial issues in women with Rett syndrome. Sunday morning

The Trasiti t Adulthd ad Cmmuity PrgramsTransitioning to adulthood means many things: living and

work options, recreation and social events, guardianship, and

Social Security, Supplemental Security Income, Medicaid,

Section 8, and other government benet programs.

Planning or a meaningul lie in the community takes time,

relationships and research. Learn what is available, what

questions to ask and how to access the resources currently

available to plan or lie in school, ater school, and adult

community options or women with Rett syndrome. This

session is appropriate or caregivers o older teenagers andbeyond. Participants will learn how to enable people to make

inormed choices regarding their particular needs, and the

services that might be helpul to them. Sunday afternoon

Uderstadig RTT ad other MECP2 Disrders This session isparticularly ideal or the newly diagnosed, the newcomer or

to brush up on the basics o Rett syndrome. We will cover in

high level: a bit o history; incidence rates; consensus criteria

or making the clinical diagnosis o classic or atypical Rett

syndrome; emales and males; longevity; genetics and MECP2;

plus common medical issues. Saturday morning

Ways t Make it G Right A Look at IGF-1 and other SmallMolecules Plasticity, or the adaptive response o the brain

to changes in inputs, is essential to brain development and

unction. The developing brain requires a genetic blueprint

but is also acutely sensitive to the environment. The adult

brain constantly adapts to changes in stimuli, and this

plasticity is maniest not only as learning and memory but

also as dynamic changes in inormation transmission and

processing. The goal o the Sur laboratory is to understand

long-term plasticity and short-term dynamics in networks

o the developing and adult cortex, aiming to use insights

rom brain development to understand mechanisms o

developmental brain disorders such as Rett syndrome.

Sunday afternoon

Well Child ad Adult Care overview During this session,general health maintenance recommendations will be

discussed, including immunizations and periodic well

visits or the child and adult with Rett syndrome.

Saturday Afternoon

What Is DnA? Extract It Yursel In this simple, eective wetlab, IRSFs Dr. Tony Horton will walk participants through an

experiment while discussing the importance o DNA and

MECP2 in human development. LIMITED TO 25 PARTICIPANTS,

on a rst to arrive basis. Sunday morning

What Is Gig Right I Her Brai In this talk Dr. Djukic willillustrate the belie with which she runs the Rett Syndrome

Center at Monteore: that a child with Rett Syndrome will be

best served i approached not only as a patient but as a whole

child. Like any other individual, those with Rett Syndromebesides weaknesses have strengths and these strengths can

be utilized in order to overcome weaknesses. Treatment o

any individual symptom (seizures, irritability, apraxia) is

only a part o the broader picture. Dr. Djukic will review these

positive aspects rom dierent standpoints including cellular/

microscopic, imaging/MRI, therapies (PT, OT), psychological/

educational planning, and illustrate how they should be

incorporated into the guidance that the physician provides to

each amily or treatment, education and research planning.

Saturday morning

What Happes i Rett Sydrme at a Mlecular Level:

Epigenetics and Assay DevelopmentThis talk will provide ascientic overview o epigenetics or the non-scientist. We

will look at what genes are; how they are regulated to allow

brain cells (neurons) to unction; and the normal unction o

MECP2 (the gene mutated in Rett syndrome) in this regulatory

process. The talk will explain what epigenetics is as it pertains

to Rett Syndrome and what the MeCP2 protein does that is

so important. We will also look at modeling Rett Syndrome in

human cells and mouse models or developing treatments.

Sunday morning

What Happes i Rett Sydrme at a Systems LevelNeurobiology of RTTThis talk will provide a scientic

overview o system level analysis o brain unction or thenon-scientist. We will look at what brain cells (neurons)

are; how they acquire adult unction in response to the

surrounding environment and how MECP2 (the gene mutated

in Rett syndrome) may aect their capability to properly

incorporate and process the external world. The talk will

discuss new strategies to recover neuronal unction in

mouse models o Rett syndrome. Sunday morning

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Stephe E. Bajardi,Executive Director othe International Rett Syndrome Foundation(IRSF), has a strong background in thevoluntary health nonprot sector, especially inundraising, public policy and management.He has worked at the executive level orthe National Kidney Foundation, NationalHemophilia Foundation, HuntingtonsDisease Society o America, the GreaterNew York March o Dimes and the JuvenileDiabetes Foundation. Steve is currently aBoard Member and Treasurer o the NationalOrganization or Rare Disorders (NORD).

Kate Bares, BSc, Clinical ResearchCoordinator Rett Syndrome Program,Department o Neurology, ChildrensHospital Boston, earned her Bachelor s oScience in Public Health rom ProvidenceCollege in Providence, Rhode Island. Ms.Barnes has held her position as ClinicalResearch Coordinator or the past ve

years. She is currently managing the clinicaltrial investigating the Treatment o RettSyndrome with IGF-1 and is the coordinatoror the Boston site o the Rett SyndromeNatural History Study. Ms. Barnes enjoysworking closely with the Rett SyndromeAssociation o Massachusetts (RSAM) inpromoting Rett Syndrome research andamily education.

Judy o. Barrish, BSn, Rn, is the PatientCare Manager and Project Coordinatoror the Blue Bird Circle Rett Center inthe Department o Pediatrics, Section oNeurology at Baylor College o Medicine in

Houston, TX and has worked in this positionor the past eight years. She also serves asa Proessional Advisor to IRSF. She receivedher Bachelor o Science degree in Nursingat Texas Womens University in Denton, andis a Board Member or the Association oClinical Research Nurses in Houston. Mrs.Barrish began her nursing career in 1976,specializing in intermediate and intensivecare or inants, and later, urthered herexperience as manager o the PediatricNutrition & GI Procedures Suitea positionwhich she held or 12 years. During hertime with the GI/Nutrition Department,she had the opportunity to work with Dr.Kathleen Motil, who is the specialist in GI/Nutrition or the Blue Bird Circle Rett Centerin Houston. Mrs. Barrish brings with herurther educational knowledge rom workingwith the departments o Surgery and AdultClinical Care.

A M. Bergi MB, ScM is AssistantProessor in Child Neurology at ChildrensHospital Boston, an epileptologist in theComprehensive Epilepsy Clinic at Childrensand Director o the Ketogenic Diet Program.She completed her medical training at theNational University o Ireland at University

College Dublin. Pediatric training wascompleted in Ireland and Child Neurologyresidency, as well as Epilepsy and ClinicalInvestigation Fellowships were completed atJohns Hopkins University. She is a diplomateo the American Boards o Psychiatryand Neurology, Clinical Neurophysiologyand Pediatrics. She works with Dr Khwaja

in providing comprehensive epilepsyconsultation and care or patients attendingthe Rett Syndrome Clinic at ChildrensHospital Boston.

Da Chadwick, MT-BC, MS, LMHC,is a board certied music therapist andlicensed counselor, Donna earned a Mastersdegree in speech and language pathology.She spent her 35 year career in Massachusettsand Southern New Hampshire, holdingpositions at Hogan Regional Center, severalspecial education collaboratives, and retiredlast month ater 18 years at CrotchedMountain Rehabilitation Center. Donna hasdirected both clinical and academic programs,appeared in documentary lms, publishedand presented widely.

Concurrent with other employment, Donnahas conducted a private practice since1978. In an evidence-based model o musictherapy, she uses live improvised musicand captivating instruments or optimalmotivation, achievement, and mutual joy.Girls who have Rett Syndrome have beenserved in her practice or over twenty yearsand Donna has spoken o their unique MusicTherapy process at several conerences.In The Creative Arts Therapies chapter in

Developmental/Behavioral Pediatrics, 3rdEdition (Levine, Carey, Crocker, Eds. 1999),she wrote o the importance o MusicTherapy to girls who have Rett syndrome.

A passionate lielong clinician, Donna is alsoan Associate Proessor on the Music Therapyaculty at Berklee College o Music, Boston.

Christie Delaey, MS, recently graduatedrom Brandeis University with a Masters degreein Genetic Counseling and she has a Bachelorsdegree in Biology rom Providence College. Asa genetic counselor, Christine is trained tounderstand and translate inormation

regarding various genetic syndromes topatients and amilies and to provide supportand resources to these amilies. For her thesis,she decided to study genetic testing or RettSyndrome because she has a amily riend withthis condition. For the past year, Christine hasbeen interning in genetics clinics throughoutMassachusetts and working on the IGF-1Clinical Trial at Childrens Hospital Boston as anAdministrative Assistant. She will soon berelocating to Atlanta to start work as a cancergenetic counselor.

Barbara DeLuca, MEd, MSPT,ATP, isa Registered Physical Therapist with over30 years o experience working in both thetherapeutic and education systems. Shereceived her Masters Degree in Education,with ocus on Corrective and AdaptiveTherapy, rom Boston University, and herMaster o Science Degree in Physical Therapy,rom Simmons College. Barbara spent therst hal o her career developing programs,working and teaching in orthopedics,cardiology, neurology and pediatrics inFort Knox, Kentucky, El Paso, Texas andBrunswick, Maine.

Returning to the Boston area over 20 yearsago, her ocus has been working withstudents with special needs within theschool system and in their homes. In additionto attending clinics and volunteering atvarious IRSF und-raisers or the past 10years, she has had the privilege to work with,and learn rom many girls and young women

with Rett syndrome, and their amilies, in theUnited States and in Haiti. As a proessionalwith experience working with the RettSyndrome population, she was eatured in anarticle in Physical Therapy Today.

Barbara has worked at Cottting School,in Lexington, Massachusetts, since 2006.Cotting opened in 1893 as the rst non-protday school or children with disabilities.She continues with private home physicaltherapy services, as well.

Aleksadra Djukic, MD, PhD, Director, RettSyndrome Center, Albert Einstein College

o Medicine at Monteore completed herneurology residency at the Albert EinsteinCollege o Medicine. She is a diplomat o theAmerican Board o Psychiatry and Neurology.Dr. Djukic has a Ph.D. in neuropsychologyand is especially qualied or evaluationsand treatment o children with learningdisabilities, addressing both cognitive andneurological problems in children with avariety o hereditary neurological diseasesand babies with neonatal neurologicalproblems.

Dr. Djukic is a member o the InternationalConsortium or Rett Syndrome RettSearch,

leader o the working group or developmento Treatment Guidelines or Rett Syndrome,grant reviewer or IRSF, member o theInternational Committee or the researcho bio markers in Rett Syndrome andmember o the International Committee orthe research o outcome measures in Rettsyndrome. Dr. Djukic is member o RE-TT(Rett Education -Transorming Teaching)a group which is actively addressingeducational issues and provides supportto amilies.

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Jeier Edres, Family ResourceManager, IRSF, serves as a source oemotional support or parents and caregiverso those individuals diagnosed with RettSyndrome and also provides inormationand resources to the broader Rett Syndromecommunity. She not only assists amiliesthrough hardships and tough times, shehas also inspired and sparked the interest onumerous amilies and individuals across thecountry to set out on their own undraisingendeavors. She and her husband successullychair their own Strollathon each spring.Jennier has numerous helpul tips andhelpul hints to share with anyone interestedin planning an eventensuring ease andsuccess. Jennier and Justin are the proudparents o 8 year old, Jillian, diagnosed withRett syndrome.

Michela Fagilii, PhD, researcher at theF.M. Kirby Neurobiology Center, Childrens

Hospital and Harvard Medical School ocuseson how neuronal cortical circuits are sculptedby sensory experience in early postnatallie. Dr. Fagiolini has shown that intracorticalinhibition by a specic circuit connectiondirectly controlling the timing, duration andclosure o a classical brain plasticity is thedriving orce or plasticity in vivo. She is nowinvestigating the role o excitatory/inhibitorybalance in cortical circuit renement inAutism Spectrum Disorders with particularocus on Rett syndrome. The results willprovide new potential therapeutic strategiesor reactivating brain plasticity in patients.

Carlihs Faustii, is a teacher andchoreographer in the area o classicaland contemporary dance. He has workedor nearly 16 years in dance or peoplewith disabilities, in addition to acting as ateacher (ballet and contemporary) o thePostgraduate Course in Dance at the Schoolo Physical Education in Jundiai - So Paulo -Brazil. About 4 years ago he started workingwith Isabela, his rst student withRett Syndrome.

David Gerge Frame, PharmD, is AssistantProessor and the Clinical Hematology/Oncology/Bone Marrow Transplant Specialist

at the University o Michigan in Ann Arbor,Michigan. Most importantly he is the athero Kiera, a precious 5 year old girl with aCDKL5 mutation/Atypical Rett syndrome.Dr. Frame is utilizing his specialty trainingin biochemistry and pharmacology as amember o the scientic advisory boardor the International Foundation or CDKL5Research (IFCR), and is helping to guideresearch directions. Dr. Frame is also involvedin urther dening CDKL5 and its link withRett syndrome, as well as advancing ourunderstanding o therapeutic rational and

possible therapeutic interventions. He isalso an advisor to the International RettSyndrome Foundation. While his specialtyis in the eld o oncology he is also utilizingepigenetic strategies to employ changes inRett syndrome. His lie goal is to better theuture or our children.

Dald Freedma, an attorney inpractice or 38 years, is a ounding partnero Rosenberg, Freedman & Goldstein LLP,o Newton, where he concentrates onprotecting the interests o children andadults with special needs. Don currentlyserves as Board Chair o the Learning PrepSchool, a special education day school. Heis also on the Executive Advisory Council oThe Arc o Massachusetts and on the Boardo Advocates o Jewish Family & ChildrensServices. Among other past positions, hehas been Board Chair o the MassachusettsChapter o the Alzheimers Association andhas served on the Governors Commissionon Mental Retardation, the MassachusettsDevelopmental Disabilities Council andthe Board o Directors o Jewish VocationalServices, where he chaired the DisabilityServices Committee. He is co-editor o thetreatise, Estate Planning for the Aging orIncapacitated Client in Massachusetts.

Jei Grammer, Special Events ProgramManager, IRSF, serves as the go-to personor amilies and individuals who want tohost undraising events or IRSF and lendsher undraising know-how to event chairs.She serves as a virtual committee memberor various Strollathons across the countryas well as chairs the Cincinnati Strollathon.During event season Jenni is on the roadparticipating in a variety o events providingday-o support and assistance with behindthe scenes details. Jenni works in the IRSFCincinnati, OH ofce which is also herhometown. She has a background in unddevelopment and marketing and is willingand able to help make any event un, easyand successul.

Igrid A. Hlm, MD,MPH is director othe Phenotyping Core o the Program inGenomics at Childrens Hospital Boston

and an Assistant Proessor o Pediatrics atHarvard Medical School. She received herMD rom the University o Caliornia, LosAngeles. She completed an internship andresidency in pediatrics, and post-graduateellowships in genetics and pediatricendocrinology, at Childrens Hospital Boston.In 2003, she completed the Harvard PediatricHealth Services Research Fellowship, andreceived her MPH in Clinical Eectiveness atthe Harvard School o Public Health. She isa member o the Institutional Review Board(IRB) at Childrens, where she helps review

protocols or genetics studies with humansubjects, and also chairs the ExecutiveBiorepository Committee at ChildrensHospital Boston. She has been elected to theSociety or Pediatric Research, and as Fellowin the American College o Medical Genetics.Holm continues her clinic practice in geneticsand endocrinology ocusing on genetic

disorders o bone in children.

We are especially honored to have Dr. IngridHolm at our conerence in honor o hermother, Dr. Vanja Holm, MD, DevelopmentalPediatrician at the University o Washingtonin Seattle, now 82 and retired, who was oneo the rst physicians in the U.S. to deneRett syndrome.

Aty Hrt, PhD, Chie ScienticOfcer o IRSF, gained his Doctoral degreeat St. Andrews University in ScotlandU.K., where he was trained in the areas oneuroanatomy, developmental neurobiology

and neuronal cell survival. Following this,he conducted our years o post-doctoralresearch on neurodegenerative diseasesat the Rockeeller University in New York.Dr. Horton has published on aspects oneurodegeneration and neuronal cellsurvival in a number o research papersand journal ar ticles. Prior to joining IRSF,Dr. Horton gained valuable experience inresearch management spending ve years atthe Juvenile Diabetes Research Foundationwhere as a Program Director, he led a smallteam that helped set the translationalresearch agenda on Diabetic Complications.In addition, Dr. Horton spent two years at

the Alzheimers Drug Discovery Foundationwhere he worked in a Venture Philanthropysetting on the development o drugs orAlzheimers disease and related dementias.

Dick Hyt Together You Can DoAnything!Rick Hoyt uses a wheelchair, but that hasnot stopped him rom living a very ulland amazing lie. Hes competed in theBoston Marathon 29 times and in IronmanTriathlons six times. He, along with his dadDick, has ormed Team Hoyt and theyhave competed around the world doingmarathons and triathlons. The Hoyts havecompeted in over 1000 athletic events in the

last 30 years. Dick, 70, is a retired Lt. Colonel,having served in the military or 35 years.Rick, 49, is a graduate o Boston Universitywith a degree in Special Education. Rick wasborn in 1962 as a spastic quadriplegic withcerebral palsy and as a non-speaking person but despite these disabilities, Ricks mindand spirit have always been strong. His amilysupported his quest or independence andinclusion in community, sports, educationand the workplace, culminating with hisgraduation rom Boston University.

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Dick travels the country doing corporateand community presentations, educatingthe public about disability awareness andpromoting the Team Hoyt motto, Yes YouCan. Through his presentation, Dick shareshis lielong commitment to changingattitudes and educating others on the worldo disabilities. He and his amily have seen an

impact rom their eorts in the area o publicattitude toward people with disabilities. Youmay visit their website at www.teamhoyt.com to learn more about their story and seemany pictures o their journey through their30 years o racing.

Mary Jes, MD, is a pediatrician andpartner in East Bay Pediatrics, Berkeley, CA.She has served as Pediatric DepartmentChairman at Alta Bates Hospital in Berkeley,CA, and currently serves on the AlamedaCounty Childrens Advisory Council. Beoregoing to medical school she worked as apublic health nurse in NOLA. She receivedan MPH in Maternal Child Health rom theTulane School o Public Health and TropicalMedicine. Six years ago one tiny patient withRett Syndrome and her parents touched thehearts o Dr. Jones and her amily. She joinedwith other clinicians to ound Katies Clinicor Rett Syndrome at Childrens HospitalOakland. The multidisciplinary clinic nowserves patients rom the western regiono the U.S. By working with experts in theeld and by partnering with physicians,educators, therapists, and amilies it is Dr.Jones goal to provide comprehensive careor patients with Rett syndrome.

omar Khwaja, MD PhD. is a childneurologist and Director o the RettSyndrome Program at Childrens HospitalBoston and Harvard Medical School.He graduated rom the University oCambridge in the United Kingdom andhas a PhD in Human Molecular Genetics.Beore moving to Boston, he worked at theRoyal London Hospital and Great OrmondStreet Hospital or Children in Londonand the Murdoch Childrens ResearchInstitute and Royal Childrens Hospital inMelbourne. He established the Boston RettSyndrome Program in 2007 and overseesthe care o over 300 children and adults

with Rett Syndrome as well as MECP2and CDKL5 related conditions. He is thePrincipal Investigator or the clinical trialo mecasermin (IGF1) or Rett Syndromeand a co-investigator in a number o otherRett-related studies. He is a Member o theRoyal College o Physicians and the RoyalCollege o Paediatrics and Child Health. DrKhwaja specializes in neurogenetic disorders,pediatric critical care neurology and etal andneonatal brain disorders.

Kathry Schae Kissam, Chairman, IRSFBoard o Directors, is a branding, publicaairs and issues management consultant.Her clients include Fortune 500 companies,agencies, and law rms throughout theUnited States. Prior to orming her ownconsulting business, Kathryn was the ChieMarketing Ofcer and Founder o Evolve24,a technology-based issues managementcompany. Kathryn also worked or MonsantoCompany o St. Louis Missouri or 13 years invarious leadership capacities and served on theboards o the Monsanto Fund, The PharmaciaFoundation and The Missouri HistoricalSociety. She is a graduate o Leadership MetroRichmond and a requent speaker at brandingand corporate citizenship conerences. Herconnection to Rett Syndrome began throughher sister, RTT clinician and researcher, Dr.Carolyn Schanen, o DuPont Childrens Hospitaland continues to grow through the meaningulrelationships she has built with amilies, donors,board and sta.

Jae Lae, BSn, Rn has more thaneighteen years experience with RettSyndrome as a research coordinator andmanager in child neurology and theCivitan International Research Center at theUniversity o Alabama at Birmingham. Sheworks alongside Alan Percy, MD in their RettSyndrome Clinic and as the Project Manageror the Angelman, Rett, and Prader-Willisyndromes consortium o the Rare DiseaseClinical Research Network. The Natural Historystudy o Rett Syndrome and MECP2 mutationsalone has enrolled over 900 emales andmales with the disorder. She has co-authored

over 25 publications, many pertaining to RettSyndrome.

Jane serves as a member o the RettSearchStudy Group, an international collaborationrelated to the organization o clinical trialsor Rett Syndrome and is the Family SupportProject Manager to the InternationalRett Syndrome Foundation, serving as aresource o issues regarding medical care oramilies o children with Rett Syndrome andmutations in MECP2. She is a proessionaladvisor to the Southeastern Rett SyndromeAlliance Board. She has spoken numeroustimes on the topic o medical issues in Rett

Syndrome and on issues related to thematuring woman with Rett syndrome.

Judy Lariviere, M.Ed., oTR/L, is anAssistive Technology Specialist and aPediatric Occupational Therapist who hasworked in the eld o Assistive Technology,including Augmentative and AlternativeCommunication (AAC), or the past 23 years.Judy is also the Communication Specialist atKaties Clinic or Rett Syndrome at ChildrensHospital & Research Center Oakland. Overthe past ten years, Judy has worked with

many girls with Rett Syndrome (RTT);identiying their best means o access totechnology or communication and learning,while also implementing tools and strategiesto support their educational progress,particularly in the area o literacy. Judy hasconducted over 100 successul eye gazetrials with girls and young women with RTT

using her custom designed page set that shedeveloped specically or girls and womenwith Rett syndrome. She has presented atseveral international technology conerencesabout the work she is doing with girls withRTT. Judy is personally committed to helpinggirls with Rett Syndrome express theirown thoughts and eelings, develop socialcloseness, and learn to read and write.

Mickie McCl, parent advocate, creditsher daughter Ellie as the driving orce behindher creativity, resourceulness, energy andproblem-solving ability that has enabledMickie to strategize about Ellies home healthissues, drive or ull-inclusion in a regularschool program with modied curriculum,and raise unds and awareness or research.She also serves on the IRSF Family AdvisoryBoard (FAB), and is working with Dr PetraSwidler at Cardinal Glennons ChildrensHospital to open a Rett Syndrome clinic.Mickies true talent is her ability to work thesubject o Rett Syndrome into nearly everyconversation with charm and joy.

Kathlee J. Mtil, MD, PhD is an AssociateProessor o Pediatrics and research scientistat the USDA/ARS Childrens Nutrition ResearchCenter, Baylor College o Medicine, and servesas a pediatric gastroenterologist in the Sectiono Pediatric Gastroenterology and Nutrition,Texas Childrens Hospital, Houston, TX. Dr.Motil earned her MD degree at The MedicalCollege o Pennsylvania and her PhD innutritional biochemistry and metabolism atThe Massachusetts Institute o Technology. Shecompleted her pediatric residency at MontrealChildrens Hospital and her ellowship inpediatric gastroenterology and nutrition atBoston Childrens Hospital Medical Center. AtBaylor College o Medicine, Dr. Motils researchinterests ocus on growth and nutrition inchildren with rare genetic disorders, includingRett syndrome. She has conducted studies

on the dietary energy and protein needs, oralmotor and upper gastrointestinal dysunction,and the clinical outcomes o gastrostomyplacement in girls with Rett syndrome. Hercurrent projects examine the natural historyo osteopenia and the role o dietary calciumin reversing low bone mineral density in girlsand women with Rett syndrome. Dr. Motil hasserved on the Scientic Advisory Boards othe International Rett Syndrome Foundationand the National Foundation or EctodermalDysplasias. She has published more than 120articles in her eld.


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Jh W. nadwry, CFP is a nancialplanner and investment advisor who knowsinsurance inside and out. He has spent hiscareer specializing in special needs planning.His son has special needs, and he is veryactive in und-raising and in the publicpolicy arena in the eld. John has served onthe Massachusetts Governors Commissionon Mental Retardation. Also, John, with hispartner, Cynthia Haddad, whose brother hasspecial needs have co-authored a book onspecial needs estate planning. By experienceand inclination, he is knowledgeable andresponsive to the sensitive, personal as wellas strictly nancial issues that amilies ace.

Jerey L. neul, MD, PhD is AssistantProessor o the Department o Pediatrics,Section o Neurology and the AssistantMedical Director o The Blue Bird Circle RettCenter at Baylor College o Medicine inHouston, Texas. Dr. Neul received his MD and

PhD rom the University o Chicago, Illinois,and completed his residency and ellowshipprograms at Baylor College o Medicine. Hehas board certication in Neurology, withSpecial Competency in Child Neurology andis a member o the Child Neurology Society,the American Academy o Neurology, and theSocietyor Neuroscience.

Dr. Neul is active both in laboratory andclinical research working closely with Drs.Daniel Glaze and Huda Zoghbi in those areas.Dr. Neul is interested in translating knowledgeacquired rom basic science research intopotential therapies or Rett syndrome. Heis actively using animal models o Rett

Syndrome to elucidate the pathophysiologicalmechanisms o disease and to conductpreclinical trials o potential therapies.

Da L. nimec, MD has practicedpediatric physical medicine & rehabilitationin Boston or the last 16 years. Prior tobecoming a physician, she worked as aspecial education teacher or six years. Shecurrently specializes in the management ospasticity and dystonia. She works closelywith the Rett Syndrome Program team atBoston Childrens Hospital.

Susa nrwell, M.A. Spec. Ed., hasworked with a wide array o special needsstudents or the last 34 years. She hasspent the last 23 years in private practiceworking primarily with children on theAutistic Spectrum and girls who have Rettsyndrome. She is trained in GreenspansFloortime model and would considerhersel a relationship based educationalspecialist. She has ocused in the recentpast on augmentative communication, playand literacy or girls with Rett Syndromeand children on the spectrum especially

those without verbal language. She consultsto various school districts on successuleducation o children with signicant needsand has presented workshops throughoutthe U.S. and Canada dealing with play andliteracy or children with Autism and girlswith Rett syndrome.

Paige nues, Director o Family Support,IRSF, dedicates her time to providing a saetynet o accurate inormation, emotionalsupport, and connections or the amilies,caregivers, and support teams o childrenwith Rett Syndrome at all stages o their lives.Paige has served on the Board o Directors,as a Regional Representative, and is parentounder o Katies Clinic or Rett Syndromeat Oakland Childrens Hospital. She enjoyeda successul career in sales, marketing, andbusiness development with Fortune 500companies prior to her daughter Katiesdiagnosis o Rett Syndrome in 2003. She andher husband Jesse live in Caliornia, proudparents o three extraordinary girls.

Heather M. oLeary, BSc, BiomedicalEngineering Research Scientist, RettSyndrome Program, Department oNeurology, Childrens Hospital Boston,earned her degree in biomedicalengineering rom Boston University. Shehas over ten years experience in medicalresearch ocused on quantitative analysiso magnetic resonance images (MRI),electrocardiogram (ECG), blood pressure,respiration, electroencephalogram (EEG),and near inrared spectroscopy (NIRS).Her work includes real-time bioeedbackapplications to enhance sel-regulation ocortical stimulation, analysis o pre-termpostnatal autoregulatory developmentand antecedents to brain injury, andanalysis o autonomic dysunction in Rettsyndrome. She is currently engaged in theTreatment o Rett Syndrome with IGF-1clinical drug trial examining quantitativeautonomic biomarkers as well as developingnovel syndrome specic biomarkers thatcharacterize clinical severity.

Kare Patters has been teachingspecial education or 27 years and nds it

is a true privilege to teach and learn romthese children every day. She ocuses mosto her attention on literacy andcommunication. Although some o herstudents cannot read, they all benet romreading activities. For communication needs,she always work with what matters to thechild; i it isnt meaningul to them then theywill not respond, and she has never taughttwo children in the exact same way. Karen isalso a Board Member, EducationRepresentative, or the Coastal PlainsInteragency Coordinating Council; Bright

Beginnings: Birth 3 In Home Services.She consults or parents, caregivers, andteachers/therapists o Rett Syndromegirls, and has presented at the ollowingconerences: International Rett SyndromeConerence, Southeastern Rett SyndromeAlliance, Assistive Technology IndustryAssociation in Orlando and Chicago

2008, 2009, and 2010, and Gul CoastAugmentative Communication Conerences2009 and 2010. Karen operates a website,www.eyesplease.com which eatures eyegaze communication kits or nonverbalchildren and adults. She created most o thekits to address the needs o her students.The kits are designed or medical needs,critical inormation or caregivers and rstresponders, puberty, and daily choicemaking. Beginning in June o 2011, the sitewill eature literacy activities and ideas.

Ala Percy, MD is a pediatric neurologist atthe University o Alabama and internationallyknown researcher on Rett syndrome. He hasoccupied prominent leadership positions innumerous academic neurological societiesand is Past President o the Child NeurologySociety and the Child Neurology Foundation.Dr. Percy has served as Director o theAmerican Board o Psychiatry and Neurology,is a Fellow in both the American Academyo Pediatrics and American Academy oNeurology and is actively involved in manynational and international pediatric andneurology societies. Dr. Percy has beennamed one o America s Best Doctors onthe www.bestdoctors.com web site. Dr.Percy has served as Scientic Director or the

International Rett Syndrome Association andhas organized and led several internationalscientic meetings on Rett syndrome. Therst NIH unded Rett center was establishedunder Dr. Percy at Baylor College oMedicine in 1986. He currently serves asProessor o Child Neurology, AssociateDirector CIRC Director, UAB IDDRC PrincipalInvestigator, and PI o the Angelman, Rett,and Prader- Willi Syndrome Rare DiseaseClinical Research Consortium. In addition toauthoring more than 120 scientic papers onRett Syndrome and more than 300 in totalrelated to Child Neurology, Dr. Percy is aco-author oThe Rett Syndrome Handbook.

Elaie Rabbitt is a trainer or theFederation or Children with Special Needsin Massachusetts. For over our years shehas served as a parent mentor and supportspecialist in helping parents advocate or theirchildren in the special education process. Shehas authored several presentations or parentsand serves as a training consultant to PPAL(Parent & Proessional Advocacy League). Elaineis passionate about helping amilies o

Speaker Bigraphies - continued

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children with special needs learn to understandthe special education process, which starts withdeveloping a vision or their child.

Diae M. Rss, MS, LCPC has spent thelast twenty years developing adaptationsor games, crats and activities or her

daughter Lindsey and her typicallydeveloping peers. Diane has a MastersDegree in Education and is a LicensedClinical Proessional Counselor. Diane andher husband Mick live in Schaumburg, ILwith their our children including Lindsey,age 23, with Rett syndrome.

Mick Rss, MS has a Masters Degreein Education with over thirty years oteaching experience at the high school level.Mick and his wie Diane have served onnumerous educational committees locallyand throughout the state o Illinois. Theyhave presented at many state and national

conerences on a variety o educationaltopics. Mick and Diane have been activelyinvolved in their daughter Lindsey s inclusiveeducation. They live in Schaumburg, IL withtheir our children.

Gail Seche, MMSc, RD, CSP is a RegisteredDietitian who has specialized in pediatricssince 1989. She received her Masters Degreein Medical Science at Emory University inAtlanta. Gail spent the rst hal o her careerworking with children with special healthcare needs in the Pediatric SubspecialtyClinics at Caliornia Pacic Medical Centerin San Francisco. She then took a position

at Childrens Hospital and Research Centerin Oakland, Caliornia where she nowmanages the Clinical Nutrition Departmentand serves as the dietitian or Katies Clinicor Rett Syndrome. In addition to attendingmonthly clinics and volunteering or the RettSyndrome Natural History Research Study,in 2008, she co-authored a Nutrition Focuspublication or the University o Washingtontitled: Nutrition Management of Childrenwith Rett Syndrome: An Update.

Bria Sktk, M.D., M.P.P., a clinical ellowin genetics at Childrens Hospital Boston,Massachusetts General Hospital, Brigham &

Womens Hospital, and Dana Farber CancerInstitute, has dedicated his proessionalenergies toward children with cognitiveand development disabilities. In 2001 he co-authored the national award-winning book,Common Threads: Celebrating Life with DownSyndrome and, most recently, Fasten YourSeatbelt: A Crash Course on Down Syndromefor Brothers and Sisters. He is a graduate oDuke University, Harvard Medical School,and Harvard Kennedy School. Brian recentlyauthored major research on how physiciansdeliver a diagnosis o Down syndrome to new

and expectant parents. He has been eaturedin The Wall Street Journal, The New YorkTimes, The Washington Post, The L.A. Times,NPRs On Point, and ABCs Good MorningAmerica. Brian worked with Karen Ericksonand David Koppenhaver on Rett Syndromecommunications skills through storybookreading.

Mrigaka Sur, PhD, Newton Proessor oNeuroscience, Department Head o Brainand Cognitive Science at MassachusettsInstitute o Technology, is a distinguishedand widely published neuroscientist. Hisresearch interests include organization,development and plasticity o the cerebralcortex o the brain; experimental andtheoretical approaches to neuronal networksand processing; plasticity and learning indeveloping and adult sensory systems anddisorders o the brain.

Elera Tamase MA, QCS, QTS,ETgraduated with a Masters degree inelementary education with specializationin working with the motor disabled romthe International Peto Institute, Budapest,Hungary in 1992. As a conductor - teacher,she designed and delivered comprehensiverehabilitation programs based onConductive Education principals in Englandand Canada or children with neurologicallybased motor disorder and/or globaldevelopmental delay beore moving to SanJose, CA in 2006. Eleonora provided homeand center based Early Intervention servicesthrough the local regional center or childrenunder three. She completed her EducationalTherapist program at the University oCaliornia Santa Cruz and is currently in theprocess o obtaining her Level 1 certicationin Handwriting without Tears. Through herprivate practice, Learning Together, Eleonoraprovides a holistic, educational approach toamilies with children with motor challenges.She works with various school districts in thethe Bay Area regarding accommodationsor inclusion, transition planning andintegrating the motor component in theschedule to maximize active participationand provide opportunities or active learning.She also provides training or teachers, aidsand para-proessionals.

Ala White, Director o ResidentialAlternatives, TILL, Inc. has been working inthe Human Service eld or the last 30 years.He began his career in 1979, working as aSpecial Education teacher in the Bualo,NY public schools. Ater teaching or oneyear, he let the school system and movedto Houston, Texas, where he began workingwith adults with developmental disabilities.In 1984, he began working at TILL, Incas a Qualied Developmental Disability

Proessional as community residentialservices were being developed as peoplewere moved rom institutional settings.Over the last 26 years, he has worked closelywith amilies, individuals and public undingsources to develop individualized residentialsituations called Creative Living Options(CLO). This model provides amilies and

individuals a variety o service models toaddress individual needs as an alternative totransitional group living. The CLO programsare ever changing and the models havecontinued to expand and develop as moreamilies and caregivers work cooperatively.This model also addresses unding issuesand may combine several dierent undingsources in one residence. He continues to beexcited about the possibilities available toindividuals i we look at all avenuesand resources.

Maggie Deis-Wurm is a credentialedmedical Spanish interpreter andtranslator. She serves as an IRSF BilingualRepresentative and is also mother tobeautiul Madasyn with Rett syndrome.Maggie is a tireless undraiser and advocate,and she was the organizer and brainchildbehind the gathering at the Today Show onOctober 1st, 2010.

Christpher Wyder PhD is currently avisiting scientist at the Schulich School oMedicine, University o Western Ontario.He previously held the position o principalinvestigator in the McMaster Stem Celland Cancer Research Institute (SCC-RI).Christopher received his PhD in braindevelopmental genetics in 2002 romRockeeller U

Documents

IRSF Conference Program Final 2011 050911