The MMA Research Fund is Launched

The MMA fund was launched in early 2000, to support ongoing research at the Children's Hospital of Philadelphia (CHOP). The research fund began with a grant obtained through the diligent effort of Marty and Kate Moran (parents of Kayleigh, then age 16 mos.). They worked with their State Representative and Speaker of the House of Representatives in PA, Mr. Matt Ryan, who had a passion for healthcare issues and didn't hesitate to help our effort.

When fund existed at CHOP, there was an agreement stating that should MMA research ever cease at CHOP, MMA families would have input on where to direct the funds. In the summer of 2003, research on MMA and its director moved to the National Institutes of Health (NIH) in Bethesda , MD , where work continues today with the addition of staff and support.

In conjunction with that move, the MMA Research Fund was moved from CHOP to the Organic Acidemia Association (OAA). The OAA, formed almost two decades ago, is a 501(c)(3) nonprofit organization to provide support and awareness for inborn errors of metabolism like MMA. Then in late 2009 the OAA-MMA Research Fund shifted administrative responsibilities of the MMA Research Fund to ‘Angels for Alyssa’ (also doing business as MMA Research Fund) another 501c3 organization formed in 2008. This new home for the MMA Research Fund will pool and hold all donations received in throughout the year and plans to give donations from this fund to Dr. Venditt’s lab at NIH on a semi-annual basis per the terms of a newly executed Donor Agreement between the “Angels for Alyssa” and NIH.

While the name and location of the fund has changed it is important to note that the sole purpose of the fund has never changed; to support MMA research leading to new therapies, essentially a cure, from this devastating disorder.

Fundraising Efforts

It is our hope that family and friends of our children with MMA will become actively involved in the fundraising process. Individually, we may feel like our few hundred dollars or thousand dollars won't make a difference. This idea cannot be further from reality. In 2003, about eight-five families with children with MMA were listed in the OAA family roster. If we work throughout the year on one, two, three fundraising efforts and can raise $3,000 to $4,000; our fundraising could quickly total in the six figures. That is an incredible amount of money and it is extremely obtainable. Money that is pivotal to the vital research and focused entirely on our children at NIH.

The ideas are endless. People have talked about chili suppers, dances, everything-a-thons (bowling, basketball, dancing, softball, etc.), raffles, beef-n-beers, corporate mailings, car washes, etc. Different events work for different people. What ever you can do will make a big difference. The important thing is that you get involved and help. As this web site evolves, it will become a place to share ideas and celebrate successful events with people around the country and the world.

One of the current fund raising efforts that has substantially funded the research fund is an event called "Ceili for Kayleigh" (both pronounced kay-lee; Ceili meaning Irish party or celebration and dance). Kayleigh Moran's parents are actively involved in the Irish community and have a great deal of support from their family and friends. The event features one of the most popular Irish bands in the Philadelphia area called Blackthorn and raised approximately $20,000 in the first year and is now an annual event. All money raised is sent directly to the OAA-MMA Research Fund.