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National Development
Webinar:July 2017
Listen to the Recording here!
Streaming recording link: https://alsa.webex.com/alsa/ldr.php?RCID=09e91ab4cfab45c8ea3eb613b3708a64
Download recording link: https://alsa.webex.com/alsa/lsr.php?RCID=62fbcf9afc36da2d0d6d773b89fbd524
Session Presenters:
Robert Bennett | Manager, National Development [email protected]
Kat Parker | Associate Director, National Development [email protected]
Session Agenda: EDAU
Corporate Materials
Summer Time Fun! UVP of The AssociationDeep Dive into our 3
Mission PillarsGuest Speaker: National
Care Services Upcoming Presentations
Revenue SourcesCorporate
Sponsorship Dollars
In-Kind Donation
Matching Gift
Employee Giving
Program
Marketing Dollars
Foundation
Major Gift
Planned Giving
Special Events
Walk to Defeat ALS
Gala
Golf
Team Challenge ALS
Internal Campaigns
EDAU
May-ALS Awareness
Grants
Family Foundations &
Trusts
Federal and State
Institutions
Schools
Religious Institutions
Clubs, Associations
Chapter Donor File
Midlevel
Sustainers
Mass Marketing
Direct Mail
Online
Cause Related
Grassroots Fundraisers
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WHAT IS A UNIQUE VALUE PROPOSITION?
A Unique Value Proposition is what makes partners choose you, instead of the competition. It’s a clear and brief statement that outlines to potential partners The Association’s unique value-creating features.
3 EASY STEPS:1. Describe "What" you bring to the table.2. Ask "So what?― What’s the Value?
3. Quantify ―Benefit"
WHAT DO WE HAVE TO OFFER?
Establish goals. Whether long- or short-term, clearly define your chapter’s objectives, its direction and a way to measure the end results specific to your current and potential corporate partners.
Analyze your current situation. In this analysis, clearly define your values, structure, and systems. Pinpoint what your exact mission priorities are in terms of your established goal timeline, understand what the unmet need is and strategize what corporate partners can assist with closing that particular gap.
Speak to your target audience.1. You want to clearly demonstrate where exactly
dollars are being invested by your chapter and at The Association national level.
2. You need to analyze the philanthropic pillars of giving, overall mission, and vision of a potential corporate partner in order to ascertain the best overall proposition to that organization.
To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.
The ALS Association is the only national nonprofit organization fighting ALS on every front.
Public PolicyCare Services Research• Advocating for increased public and
private awareness and support of ALS community needs.
• Advancing ALS care initiatives at both the state and federal level.
• Collaborating with government agencies to expedite drug development.
• Expanding access to consistent care, treatment and community-based resource and support services to enhance quality of life for all affected by ALS.
• Funding and accrediting Clinical Centers of Excellence nationwide that provide multidisplinary care proven to extend the lives of people living with ALS.
• Investing in the most promising ALS research projects around the world, with 9 strategic scientific focus areas with the goal of finding a treatment and cure for ALS.
• Supporting 57 clinical trials in 2016.• Spearheading scientific collaborations
designed to accelerate discovery.
The ALS Association
SUMMER SERIES-MISSION FOCUS: CARE SERVICES
MISSION: To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to
the fullest.
Care ServicesPublic Policy Research
The ALS Association
Care Services
Research
Advocacy
3 MISSION PRIORITIES ONE VISION
The ALS Association
People are Livingwith ALS
The ALS Association
The ALS Association - Care Services Team
• Program Associate, Care Services: Tania Ballantine, BS [email protected]
• Manager, Resource Connection: Miriam Brodkin [email protected]
• Consultant, Assistive Technology: Alisa Brownlee, ATP
• Sr. Vice President, Care Service: Kimberly Harding-Maginnis, BS,MBS [email protected]
• Director, Chapter Care Services: Cynthia Knoche, RRT, BBA [email protected]
• Assoc. Director, Ed. & Professional Development: Abray Stillson, BA [email protected]
• Sr. Director, Certified Center Programs: Nicole Yarab, RN, BA [email protected]
The ALS Association
Miriam Tania
AbrayCynthia
Kim
NicoleAlisa
The ALS Association
Clinical Quality
Access to Care
Access to Therapies
Consistency through Core Services
Programs to Address Gaps and Needs
Education Programs & Resources
Collaborations – Association-wide, National, and International
IN SUPPORT OF OUR STRATEGIC PLAN
The ALS Association
CLINICAL QUALITY AND ACCESS TO CARE
• Develop, implement and monitor clinical programs - CTCE, RTC, affiliated providers
• Work with Chapters to develop relationships with providers and potential clinical partnerships
• Build collaborations with healthcare and community providers
• Educate healthcare professionals and community about multidisciplinary care and clinic coordination
• Work with our attorney to ensure that clinic relationships and documentation are aligned, consistent, and address compliance issues
• Focus on best practices/standard of care/quality measures
• Explore interesting and innovative models of care
The ALS Association
The ALS Association
MULTIDISCIPLINARY CARE MODEL
The ALS Association
CLINICAL PROGRAMS
• Rooted in care standards and recommendations from the American Academy of Neurology (AAN) Practice Parameter and Quality Measures
• CTCE and RTC have established eligibility criteria and defined processes
• Major difference is the research imperative for CTCE
• Clinics must have relationship with and support from their local chapter and meet all requirements to apply for and maintain status (CTCE, RTC)
• Nomination and application process
• Review process
• Achievement
• Annual Reporting process
• Recertification/Reconfirmation process
The ALS Association
CCP - FOUNDATION AND TIMELINE1989 Certified Center Program (CCP) established
2012-2013 CCP reviewed, revised, rebootedRenamed Certified Treatment Center of Excellence (CTCE) ProgramCTCE= 33 Grant funding from national office increased Defined second center designation, without the ALS research
imperative: Recognized Treatment Center (RTC)
2016 Recognized Treatment Center (RTC)- formal program developed and grant funding included from national office
2017 CTCE=53 (grant of $25,000 per), RTC=17 (grant of $5,000 per),Affiliated providers = 64+
The ALS Association
TX
KSCO
MO
MN
MI
NC
ME
VAWV
VT
DC
NM
WY
The ALS Association Certified Treatment Center of Excellence – 53
The ALS Association Recognized Treatment Center – 17
ALS Association Affiliated Clinics – 64+
IA
OH
OR
NV
IL IN
SC
CA
WA
NE
AZ
PA
WI
AL
OK
UT
ID
MT ND
SD
ALS Association Chapter- 39ALS Association Territory - 2
AR
GAMS
LA
FL
TN
KY
NY
HI
AK
MD
DE
CT
NJ
MA
NH
RI
The ALS AssociationChapters and Clinical Partners
The ALS Association
Information and Referral Services Respite Service
Programs for Caregivers Home Visits
Support Programs Transportation
Equipment Loans Volunteer Programs
Education Home Modifications
Care Management/Navigation Outreach Programs
Certified Centers, Recognized Clinics Other ‘novel’
Assistive Technology/Communication
POTENTIAL PORTFOLIO OF SERVICES
The ALS Association
CHAPTER FIELD CARE SERVICESCHAPTER STAFFING New Service Territories Collaborate with National/Chapter Staff Search New Chapter Hires/Chapter Staff Analysis
ORIENTATION New chapter Staff Chapter Boards to Care Services New National Staff
The ALS Association
CHAPTER FIELD CARE SERVICESPROGRAM/SERVICE OPERATIONS & PLANNING Core and Advanced Program Assessment Templated Programs Support Consistency Collaboration with National/Chapter Management Alignment with Strategic Plan
PROGRAM/SERVICE DEVELOPMENT Determine Unique Needs & Gaps Identify Known and Potential Resources Develop and Implement Operational Plans
The ALS Association
PARTNERSHIPS AND COLLABORATIONSALS Association National Office Departments
ALS Association Chapters
National Professional, Medical and Allied Health AssociationsAmerican Academy of Neurology
Paralyzed Veterans of America
Veterans Administration
International Alliance of MND/ALS
Other ALS Designated Organizations
Professionals and National & Local Care Service ProvidersSubject Matter Experts
Area Offices of Aging
State Home Health & Hospice Associations
Local Health Agencies
Local DME Providers
The ALS AssociationThe ALS Association
• Develop and implement programs to support and enhance quality of life for people living with ALS, their families, and caregivers.
• Create and implement programs and professional development opportunities to support healthcare professionals.
• Maintain an educational library and resources, which includes books, videos, resource guides, factsheets, webinars, and webpages.
• Staff a resource and referral phone line and email account to field questions from the community and increase knowledge about ALS – 300 per month
CARE SERVICES EDUCATION PRIORITIES
The ALS Association
LIVING WITH ALS RESOURCE GUIDES• The ALS Association's 11 Living with ALS Resource Guides were
created to keep pace with the rapidly expanding information and research in the clinical management of ALS.
• They were designed to inform and educate people about ALS in a comprehensive and easily understood format.
• The resource guides address many of the common concerns and issues that face people living with ALS, including coping with the diagnosis, changes in thinking and behavior, managing symptoms of ALS, and approaching end of life.
• NEW! All 11 Living with ALS resource guides have been translated into Spanish and are available to view and download from our website.
The ALS Association
The ALS Association
ACCESSING LIVING WITH ALS GUIDES
The ALS Association
• These guides can be found at: http://www.alsa.org/als-care/resources/publications-videos/resource-guides/.
The ALS Association
MEDICAL INFORMATION MATERIALS
The ALS Association
• Medical Information Packet: Developed as a communication and educational tool to help inform healthcare professionals, as well as provide pertinent insurance and family information. This resource may be used as a packet or as individual pages, based on individual preference and need.
• Key Medical Information Card: Developed to include those fundamentally important considerations in an emergency situation. The card can be printed and folded to fit easily in a wallet, pocket, car glove compartment etc.
• COMING SOON! Key Medical Information Mobile App: Developed as an electronic accompaniment to the Key Medical Information Card, the purpose of the app is to provide critical, personalized patient information in an emergency situation.
The ALS Association
ACCESSING MEDICAL INFORMATION MATERIALS
The ALS Association
• These resources can be found at: http://www.alsa.org/als-care/resources/publications-videos/medical-information-packet/.
The ALS Association
YOUTH AND FAMILY PROGRAMMING
The ALS Association
• Families and ALS Resource Guide: The purpose of this guide is to help families start answering many of the questions that will be asked, as well as to offer support and suggestions for professionals assisting with families affected by ALS. Now available in Spanish!
• Summer Camps: The ALS Association helps fund several summer camps throughout the US. The purpose of which is to provide emotional and educational support to children and young adults who have family members battling ALS.
• Durable Medical Equipment Training: In 2017, The ALS Association provided a grant to Dr. Melinda to Kavanaugh to conduct research and run training programs with youths in the correct uses of DME with two pilot chapters, with the goal of making the program nation-wide in the near future.
The ALS Association
PROFESSIONAL EDUCATION
The ALS Association
• The ALS Association Clinical Conference• Biennial educational conference for ALS/MND healthcare professionals• Provides current information on best practices and guidelines, multidisciplinary team
care and coordination, ALS-relevant programs and services, research updates, technology for therapies, respiratory devices and augmentative communication
• Opportunity to obtain Continuing Education Units (CEUs) for 8 professional disciplines• Speech-Language Pathologist Webinar Series
• Collaboration between the National Office, Iowa Chapter, and Iowa Speech-Language Hearing Association (ISHA)
• Four webinars, presented over a year, offer a comprehensive educational resource for serving the communication needs of those living with ALS
• Opportunity to earn CEUs from American Speech-Language-Hearing Association (ASHA)
• Monthly Educational Topic Webinars• Open to ALS Association Chapter staff, people with ALS, their families, caregivers, and
other interested parties
The ALS Association
Initiate Programs and Drive Change to Help Patients & Families
Needed Resources
Data
Gaps
Moving forward – What if?Are We ready?
The ALS Association
What we may need to increase or
create
What we may need to scale down or find new avenues
for delivery
WHAT DO WE NEED TO ADD OR SHIFT?
Advanced
Upcoming Development Webinars:
• Revenue Diversification-Chapter Direct Programs
• Unique Value Proposition as ONE Association
• Research
Look out for updates in your Association Weekly emails and on
The Insider!
