Meetings and Events > Fundraising

Fundraising

We are continually working to advance clinical treatments in Duchenne Muscular Dystrophy and other neuromuscular disorders through clinical research studies and much of the support we offer patients and families comes from the involvement and support of the local communities. To date, almost 600 Duchenne patients have participated in CINRG research studies. While CINRG aims to cover all costs associated with research study participation, we do depend on each participating CINRG site to offer additional support to help decrease the financial burden of the patients and families who are volunteering to participate in our clinical trials. This additional local support allows us to assist patients and families during their research experience and decrease the financial burden that may arise. As a result, each of our sites utilizes different mechanisms to offer this support for their local patients.

If you are interested in donating to, or organizing an event for, CINRG or a CINRG site, please contact us by email at info@cinrgresearch.org and we will point you in the right direction. Additionally there are many parent groups that have fundraising opportunities at the local level. A list of parent groups can be found here.

Interesting points to consider

  • It takes an average of 11.2 years for a treatment to travel from research/pre-clinical to FDA approval. (Parexel's Biopharmaceutical R&D Statistical Sourcebook 2007/2008)

  • Industry has estimated costs to be between $500 and $2,000 million to develop a new therapy, from lab to therapy. (Adams & Brantner, 2006, Health Affairs)

  • Only 1 of each 10,000 chemical compounds tested for a new medicine is found safe and effective and reaches FDA approval. (GAO-07-49, 2006)

 

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