My husband Tommy was diagnosed with Dermatomyositis in June of 2012 after only one month of symptoms. His disease turned into Intersticial Lung Disease and he was admitted to a local hospital on June 18th. Within a week he was transferred to a research hospital in Florida and passed away on July 23, 2012.
In August of 2012, his sister Laurie and I created a 501(c)3 called the Team Tommy Foundation to raise funds for families battling myositis diseases, finance research, and promote awareness (www.teamtommy.org). Since then we have held various fundraisers such as a Quarters Auction and Pub Crawl. Since The Myositis Association is celebrating 20 years we have created a slew of events for September around National Myositis Day including a Health Fair on September 7th in which we will be having a 'Miles for a Myositis Mission' exercising event, a Kickball Tournament on 9/21, and our Board of Directors will be personally delivering letters and brochures to rheumatologists, general practitioners, dermatologists and pediatricians in our area.
Since our induction just one year ago we have been able to financially assist a family in NJ living with Juvenile Dermatomyositis, a family in California living with Dermatomyositis, sponsor 3 patients to attend this year's Myositis Conference in Kentucky, and donate money to resaerch of Dermatomyositis through TMA! We are so proud of what we have accomplished in such a short amount of time. Most of all, we have raised awareness within community.
Please visit our website for more information. We are thankful to have a venue to share our story and hear what others are going through in thier own personal battles. Gos bless you all!