July 19, 2019
Friends and supporters of Many Faces of Moebius Syndrome:
For the last 10 years, Many Faces of Moebius Syndrome (MFOMS) has been a small unofficial group ran by Tim Smith and trusted individuals. We are writing to you today to make you aware of some recent and exciting changes.
We are now an official Nonprofit Corporation in the state of Colorado. We recently held our Initial Board meeting when key board members, officers, and directors were appointed.
Since the beginning we have operated without revenue or a budget, as each member paid for their own expenses, and Tim personally covered organizational expenses. This has severely limited our growth and advocacy capabilities. Despite this, our Facebook page currently has over 13,000 followers in over 40 different countries, which greatly exceeds that of other Moebius related pages. We are in the process of applying for a 501(C)3 designation, in order to carry out our mission “To create a better tomorrow by increasing awareness about Moebius Syndrome to the world”.
We are now in the process of seeking funding which will allow us to substantially increase our advocacy for causes such as Kara Smiles Fund and Riders for Moebius. These causes help bring awareness to Moebius and bring support to individuals that need it the most. Moebius Syndrome Awareness Day, or MSAD, is an annual global event dedicated to bringing awareness to Moebius Syndrome. Our goal is to grow MSAD by sponsoring various MSAD events throughout the world. Increased funding will also allow us to grow new relationships with other Moebius related causes, thereby increasing awareness. Other long-term goals for MFOMS are continuing to evolve.
We will soon be launching an online store in order to generate additional revenue. The store will include T-shirts, Cups, and Water Bottles with the MFOMS logo, and later this summer will include Moebius Syndrome Awareness Day items. We are also accepting donations via PayPal.
We at Many Faces of Moebius Syndrome are excited for the changes that are happening for our organization as well as the Moebius community. We look forward to continuing our mission and increasing awareness about Moebius.
Team Moebius (The board of Directors for Many Faces of Moebius Syndrome)
Derek White, Executive Director
Tim Smith, President
Gavin Fouche, Vice-President
Andrea Sweetwood-Smith, Secretary
Kacie Brailsford, Treasurer