Growing Stronger to LPA board - Feb 18, 2012 v5

Presentation for Little People of America Leadership mid-year meeting 2012 Feb, 2012 Please do not distribute this presentation widely www.growingstronger.org

ABOUT US ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Haider Family: Amer, Munira, Meher (5), Ahmin (3), Belal (1)

OUR INVOLVEMENT WITH LPA ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],We look forward to being life long members of LPA and support its work

MEETING CONTEXT ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

SYNERGY ,[object Object],[object Object],We would like to improve quality of life (QoL) and enable solutions

LITTLE PEOPLE ARE IMPACTED BY HEALTH ISSUES ,[object Object],[object Object],[object Object],[object Object],[object Object]

ADDRESSING HEALTH CONCERNS ARE CENTRAL TO LPA AND QOL ,[object Object],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 ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

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 ,[object Object],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 ,[object Object],[object Object],[object Object],[object Object],[object Object]

HIGHLIGHTS ABOUT GS Article Jan, 2012 http://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 ,[object Object],Growing Stronger raises $$ for research LPA’s MAB committee input Research Proposals GS funds approved research proposals Family, Friends Sponsorships Walk for Health LPA’s feedback on health priorities

CURRENT STATUS ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

FUND RAISING PLAN ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

THANKS AND ACKNOWLEDGEMENT ,[object Object],[object Object],[object Object],[object Object]

NEXT STEPS ,[object Object],[object Object],[object Object]

CONTACT ,[object Object],[object Object],[object Object],[object Object],[object Object]

Growing Stronger to LPA board - Feb 18, 2012 v5

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Growing Stronger to LPA board - Feb 18, 2012 v5