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Mimi Garcia

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FACIOSCAPULOHUMERAL SOCIETY
October 5, 2013

Do you wonder why the FSH SOCIETY has been awarded its fourth consecutive 4 Stars Charity Navigator this year?

As the world's largest grassroots network of patients with FSHD (FacioScapuloHumeral Dystrophy), families and research activists, the FSH Society has been increasing its use of ALL social media to promote awareness about the most prevalent form of MD as well as to help fund scientific and clinical research. These include: Facebook, Yahoo group forum online, Twitter, Razoo online, and Ebay charity auction sites for additional fund raisers.

As an Independent 501 (c)(3) non-profit and tax-exempt organization, the FSH Society offers many ways for patients and families to get involved in the journey to find a cure by supporting a wide variety of fund raisers throughout the country. Our most successful event raises $309K in one night!

The FSHD Biannual Patient Conference is a very valuable source of information for patients and scientists on the latest research in the USA and from other parts of the world.
These conferences are a huge support to patients and families who get a sense of a "family athmosphere" that many patients certainly appreciate. It is by going to one of these conferences that I started getting involved as a patient and fund raiser. I am thankful to the FSH Society for its fantastic work and I am proud to be part of it.

The new Executive Director, June Kinoshita, has certainly made an incredible contribution to the success of what is today an AMAZING and GROWING organization. The FSH Society website is robust and easy to use. For more info: www.fshsociety.org.

Ways to make it better...

If I had to make changes to this organization, I would...

A clearer partnersbip with the MDA and a stronger link to the NIH.

More feedback

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

MY ROLE:
Volunteer