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.
1. Presentation for Little People of America Leadership mid-year meeting 2012 Feb, 2012 Please do not distribute this presentation widely www.growingstronger.org
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9. 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
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12. 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