Growing Stronger to LPA board - Feb 18, 2012 v5

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)


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


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


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


LITTLE PEOPLE ARE IMPACTED BY HEALTH ISSUES

Sleep Apnea Spinal Stenosis

Narrow Foramen Magnum, Generalized spinal stenosis

Spine Curvature (back pain) Bowlegs


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


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


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


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.


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.


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


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


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


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


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


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


CONTACT

For more information please contact:

Amer Haider, Munira ShamimParentsemail: [email protected],

[email protected]: 408-234-0520, 408-828-3387

Growing Stronger to LPA board - Feb 18, 2012 v5

Health & Medicine

lpa members

research http

research projects

community medical science

life long members of

synergy lpas mission

lpas medical advisory

quality of life http