Television interview helps families find Mowat-Wilson Syndrome

With the approach of Rare Disease Day on February 28th, Al Triunfo, a member of the MWS Foundation Board of Directors, began contacting local news organizations in the Atlanta area in early January. He wanted to see if any of them were planning to run a story related to Rare Disease Day. After numerous emails and phone calls which seemed to go nowhere, Al was finally able to generate interest from the health team at Fox5 Atlanta to run a story about his 7 year old grandson, Logan, who was diagnosed with MWS at 10 months of age. The hope was that Logan’s story would help increase awareness about rare disease in general and specifically about MWS. The Fox5 team filmed footage of Logan and his parents, Jackie and Olin Arnold, at their home in Marietta, Georgia. They also interviewed Dr. Jose Garza, Logan’s pediatric gastroenterologist at Children’s Healthcare of Atlanta. The end result was a news story that highlighted the emotions and challenges that families face when they know something is wrong but don’t have any answers. It was also a message of hope. Hope because answers can be found and with a diagnosis, there is a huge MWS community ready to share their love and support.

Fox5 Atlanta aired the story on February 27, March 1 and March 4, and it was quickly picked up by several other Fox stations around the country. The story also spread on Facebook and websites like LittleThings, VonVon, Simple Reminders, and Adalia Rose. Additionally, a handful of celebrities, including Real Housewives of the OC, Tamra Judge, shared it on their personal Facebook pages. The video has over 50K views in its full and shortened versions. The awareness is already impacting our MWS community tremendously. There have been 5 situations of families seeing the story and contacting us with hopes of a potential diagnosis that was previously unrecognized by themselves or physicians.

The Foundation wants to thank the Medical Team at Fox5 Atlanta, Dr. Garza and of course, the Arnold family. We are so proud of Jackie and Olin for their willingness to share their personal story so that others might find answers and support.

II Annual Houston Rare Disease Day

By Karen Baer, Mowat-Wilson Syndrome Foundation Secretary

Houston celebrated its Second Annual Rare Disease Day Event on Saturday, February 25, 2017 at the United Way Building near downtown Houston. This was the second year for The Mowat-Wilson Syndrome Foundation to participate. Karen Baer, Secretary of the Mowat-Wilson Syndrome Foundation, her husband, Michael, and niece, Stephanie Holleran manned the exhibit and answered questions for four hours. The venue provided a great opportunity to network with other people working in non-profit organizations for rare diseases. Medical students, genetic counselors, families with special needs kids and the general public attended the event. The Baylor College of Medicine Department of Genetics and the Genetics Department of Texas Childrens’ Hospital provided two lectures to interested parties during the course of the event. The event was very well attended.

Many people stopped to ask questions about MWS and how it affects our kids.We had handouts about MWS and also about our new Patient Registry. Along with a poster board of generic facts about MWS, there was also a picture board depicting “Addison’s Story.” So many of the parents that stopped to chat could identify with our kids!!

There was a door prize awarded to a lucky person who completed the scavenger hunt questionnaire and was drawn as the winner. The question we provided was “What is the gene that is responsible for the symptoms associated with MWS?” Answer: ZEB2 (of course we know that!) But now so does everyone who came to check us out! How? Because we had this huge ZEBRA in our display!!

I did learn a lesson from doing this for the second year—Last year we had hundreds (ok, I’m exaggerating, but it seemed like it) Lindt chocolate truffles for guests to partake when they came to see us. Since we were at the end of the line last year, everyone had eaten too much candy already (from the other tables), so I had a lot to bring home. And, you guessed it—I finished every last one! So, this year, no candy at our table. We did sparkly clothespins to catch everyone’s eye. And I haven’t had to eat one yet! It’s a pleasure serving you all on the board. Raising awareness of MWS is one of our missions and I believe that participating in this event helped to fulfill this goal.

Mowat-Wilson Syndrome Foundation Joins the Global #GivingTuesday Movement Pledges to continue to support this rare community and their families.

rebecca-2016-cropped-smLas Vegas, NV November 14, 2016 – Mowat-Wilson Syndrome Foundation has joined #GivingTuesday, a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. Occurring this year on November 29, #GivingTuesday is held annually on the Tuesday after Thanksgiving (in the U.S.) and the widely recognized shopping events Black Friday and Cyber Monday to kick-off the holiday giving season and inspire people to collaborate in improving their local communities and to give back in impactful ways to the charities and causes they support.

The Mowat-Wilson Syndrome Foundations joined this movement in order to fund a number of initiatives that support this rare community and their families. All gifts will support:

  • The 2017 MWSF International Family Conference in Washington, D.C.
  • The Foundation to continue to be a conduit for multiple MWS research studies.
  • Family gatherings and events different locations.
  • Start our outreach program for newly diagnosed families with MWS.

92Y − a cultural center in New York City that, since 1874, has been bringing people together around its core values of community service and giving back − conceptualized #GivingTuesday as a new way of linking individuals and causes to strengthen communities and encourage giving. In 2015, the fourth year of the movement, #GivingTuesday brought together over 45,000 partners in 71 countries and helped raise nearly $117 Million online in the US alone.

“We have been incredibly inspired by the generosity in time, efforts and ideas that have brought our concept for a worldwide movement into reality,” said Henry Timms, founder of #GivingTuesday and executive director of 92Y. “As we embark on our fifth year of #GivingTuesday, we are encouraged by the early response from partners eager to continue making an impact in this global conversation.”

About Mowat-Wilson Syndrome Foundation

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.

To learn more about the Mowat-Wilson Syndrome Foundation, please visit: Website: www.mowat-wilson.org Facebook: www.facebook.com/Mowat-Wilson-Syndrome-Foundation

About #GivingTuesday

#GivingTuesday is a movement to celebrate and provide incentives to give—the 2016 iteration will be held on November 29, 2016. This effort harnesses the collective power of a unique blend of partners—nonpro ts, businesses and corporations as well as families and individuals—to transform how people think about, talk about and participate in the giving season. #GivingTuesday inspires people to take collaborative action to improve their local communities, give back in better, smarter ways to the charities and causes they celebrate and help create a better world. #GivingTuesday harnesses the power of social media to create a global movement dedicated to giving around the world.

To learn more about #GivingTuesday participants and activities or to join the celebration of giving, please visit: Website: www.givingtuesday.org Facebook: www.facebook.com/GivingTuesday

Twitter: twitter.com/GivingTues