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Website: http://www.growingstronger.org. We presented these slides to the LPA board. We want to partner with the LPA to help increase awareness and determine where to direct funds.
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Presentation for
Little People of AmericaLeadership
mid-year meeting 2012
Feb, 2012Please do not distribute this presentation widelywww.growingstronger.org
www.growingstronger.org
ABOUT US Live in Saratoga, Calif.
Near San Francisco
Amer VP at Cavium (semiconductor company) Masters Science, MBA from U of Illinois
Munira Stay home mom MA from UCLA, BA from Columbia University
3 kids
Haider Family:Amer, Munira,
Meher (5), Ahmin (3), Belal (1)
www.growingstronger.org
OUR INVOLVEMENT WITH LPA Events
Winter party Annual conference Looking forward to attending more social events and
participating in DAAA in Dallas
Activism Interested in helping increase awareness Interested in helping battle use of derogatory terms
Anti-bullying laws, ban use of m word by public funded institutions
We look forward to being life long members of LPA and support its work
www.growingstronger.org
MEETING CONTEXT
Our motivation is our 3.5 yrs old son
Our goal is to start a dialogue 1-hour today will not be enough to answer all questions. We are available
for follow-up at anytime
We are new to the community but with the help of many we have some text book knowledge about the LPA’s history Correct us if we are wrong. We need your help to learn about the
community
Medical science improves the quality of our lives. We would like to help direct medical science to focus on issues critical to the community. We believe working with the LPA is important to understand the
community’s priorities
www.growingstronger.org
SYNERGY
LPA’s MissionLPA is dedicated to improving the quality of life for people with dwarfism throughout their lives while celebrating with great pride Little People’s contribution to social diversity. LPA strives to bring solutions and global awareness to the prominent issues affecting individuals of short stature and their families
We would like to improve quality of life (QoL) and enable solutions
www.growingstronger.org
LITTLE PEOPLE ARE IMPACTED BY HEALTH ISSUES
Sleep Apnea Spinal Stenosis
Narrow Foramen Magnum, Generalized spinal stenosis
Spine Curvature (back pain) Bowlegs
www.growingstronger.org
ADDRESSING HEALTH CONCERNS ARE CENTRAL TO LPA AND QOL
The LPA’s Medical Advisory Board provides a critical service to little people and LPA members
Growing Stronger wants to raise funds to support research by the medical advisory board and others to enable them to improve QoL
www.growingstronger.org
AREAS OF HEALTH THAT CAN BENEFIT FROM RESEARCH
Life Style Recommended exercises and benefits
Nutrition Recommended wt. charts and benefits
Physical Therapy Recommend stretches, best practices
New minimal invasive surgical techniques eg. growth modulation
Pharmacotherapy
www.growingstronger.org
HEALTH CONCERNS ARE SUCCESSFULLY ADDRESSED BY AFFECTED POPULATION
Focused on healthy babies. Raised $187M in 2010. Spent $28M on research to prevent premature birth. Funded some Achondroplasia projects.
Raised $297M in 2010. Invested $72M in research which includes 103 new grants to researchers in academic institutions. Supported 347 research projects in the US, Canada and 9 other countries
Focused on breast cancer. Raised $400M in 2010. Invested $75M in research
http://www.lls.org/content/nationalcontent/pdf/2010annualreport
Examples of existing non-profits contributing to improve Quality of Life
http://marchofdimes.com/downloads/2010AnnualReportFinancialSummary.pdf
http://ww5.komen.org/uploadedFiles/SGKFTC_FY10AnnualReport.pdf
Focused on Morquio. Funding Dr. Tomatsu. Have held fundraisers at LPA events
Closest conceptual comparison to GS
www.growingstronger.org
INTRODUCING GROWING STRONGER
Growing Stronger (GS) is a non-profit project focused on raising funds to improve the lives of little people through research
Focused on dwarfism. With 10,000+ families in America we can raise $10M+/year.
Raising $1000/year/family for health from walks, events, families, friends, school bake sales etc. is manageable and great for awareness.
Our immediate goal is to raise $200K/year. Currently we have raised $490K for 3 yrs.
www.growingstronger.org
HIGHLIGHTS ABOUT GS
We are not focused on cosmetic issues like height
We want to partner with the LPA to improve Quality of life for little people
We are nimble and adaptableWe would love to hear your ideas and
suggestions on how to serve the community better
Not exclusively representing achondroplasia but it is our initial focus.
www.growingstronger.org
HIGHLIGHTS ABOUT GS
Article Jan, 2012http://www.bloomberg.com/news/2012-01-23/biomarin-s-dwarfism-medicine-marks-growth-of-400-000-rare-disease-drugs.html
We agree that Dwarfism does not need to be treated. However related medical complications need to be addressed.
We believe improvement in quality of life does not mean treatment
www.growingstronger.org
WORKING MODEL
Growing Stronger wants to work with the LPA Board and Medical Advisory Board
Growing Stronger raises $$ for research
LPA’s MABcommittee input
ResearchProposals
GS funds approvedresearch proposals
Family, Friends
Sponsorships
Walk for Health
LPA’s feedback on health priorities
www.growingstronger.org
CURRENT STATUS
Identified leading researchers in early 2011 Supporting research led by Dr. Horton and Dr. Wilcox Dr. Ain joined initial scientific advisory board in July 2011 Growing Stronger wants to work with the LPA and MAB to establish
a funded research strategy
Current Fund Committed to spending $600K over 3 years with Dr. Horton and
Dr. Wilcox. Currently raised $490K since March 2011 – Feb 2012
Roadmap Poll community for health priorities Identify new researchers who need funding
www.growingstronger.org
FUND RAISING PLAN
Goal: Have 10,000 ambassadors each raising $1K/year from their local community Friends and family give for improving health related research We have ambassadors in MA, NC, Brazil and the UK
We will be doing a press launch with articles and joint media outreach with research centers We were recently covered in Bloomberg PR with universities under works
We are partnering with sporting events for fundraising Team Growing Stronger will have shirts like team-in-training
www.growingstronger.org
THANKS AND ACKNOWLEDGEMENT
Growing Stronger has significantly evolved in its mission, scope and thinking since its inception in early 2011. We would like to
specially thank:
Doctors: Horton, Wilcox, Ain, Mackenzie, Hover-Fong, Bober
Leaders: Joe and Ginny Foos, Leah Smith, Erika Okenfuss, Bill Bradford, Lois Lamb, Gary Arnold, Joanna Campbell, Amy Andrews
35+ Family and Friends
www.growingstronger.org
NEXT STEPS
Growing Stronger to sponsor Dallas Convention 2012
Schedule medical session for Growing Stronger MAB members will provide update on status of latest research
www.growingstronger.org
CONTACT
For more information please contact:
Amer Haider, Munira ShamimParentsemail: [email protected],
[email protected]: 408-234-0520, 408-828-3387