Letter from President

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Raising Awareness. Transforming Lives.

A Letter from the President of the Mowat-Wilson Syndrome Foundation

Dear Families and Friends of the Mowat-Wilson Syndrome Community,

I am so honored to have been elected President of the Mowat-Wilson Syndrome Foundation for 2016-2017. Deby and Dave Curry have been the creators and visionaries of this foundation and the Board of Directors would like to publicly thank them for all of their hard work in making this foundation, to help families affected by MWS, a reality.

I am also a founding member of this organization and have served on the Board of Directors as treasurer, vice-president and now, president.   My grandson, Logan, born in 2010 with MWS, has been my inspiration for becoming involved in this foundation. He is a joy and a blessing, but it has been very difficult to see him endure many medical complications. I am sure that we all share these issues and feelings.

As an organization, founded in 2013, we have been quite successful in meeting our Mission Statement …The Mission of the Mowat-Wilson Syndrome Foundation is to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education. I would like to recap our accomplishments to date:

  • MWSF Website, Facebook, Newsletter and other social media
  • MWSF Medical Advisory Board
  • 2014 MWSF Family Conference at Kansas University Medical Center
  • $20,000 research grant to Dr. Merlin Butler at KUMC, for MWS tissue research
  • Conduit for multiple MWS research studies
  • MWSF Beach Days in Connecticut
  • MWSF Pool Parties in Atlanta
  • 2016 Rare Disease Day Presentations
  • MWSF 1st Annual Appeal Fundraising Letter
  • Many fundraising efforts including the Color of Love Coloring Book, Bidding for Good on-line auction site, garage sale, corporate partnering with Mercer, Henry’s Louisiana Grill and others.
  • Development of MWSF logo used on apparel and other awareness products.

But we have even more exciting plans and projects in the works that include the following:

  • MWSF Medical Patient Registry – Launching in October, 2016
  • MWSF Re-designed Website – Launched in October, 2016
  • 2016 MWSF Seattle Medical Forum – October 15, 2016
  • 2017 MWSF International Family Conference in Washington, D.C. – Registration opens January, 2017
  • Outreach Program for Newly Diagnosed Families with MWS
  • MWSF 2nd Annual Fundraising Letter – Fall, 2016
  • Recruitment of more MWSF board members, committee volunteers and non-profit, corporate and government partnerships
  • Continued MWSF Family Fun Events
  • Continued Involvement with Rare Disease Day
  • MWSF Bowl-a-thon National Fundraiser – possibly in 2018

As you can see, we have been a very hard-working, ambitious group of volunteers. We have no paid staff and we pay all of our own travel expenses. We have been fortunate to have recruited pro bono legal aid, a medical advisory staff, and board members that are very talented in website design.

But we need more help and more funds!!!

Please let me know if you would like to volunteer to be on the Board of Directors, be on a committee, help fundraise, or if you can help us in other ways, including corporate donations. Please discuss this letter with your family, friends and colleagues as well. We are looking for passionate and dedicated individuals to help us in any way possible. We are entering the next chapter in our organization and we are very excited! Please join us in our mission!

Thank You and Kindest Regards,

Susan Triunfo

President, The Mowat-Wilson Syndrome Foundation

Please contact me with your feedback!

susant@mowat-wilson.org

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