2017 Conference Workshops Now Available on YouTube
We had eight great workshops at the 2017 Conference in Washington DC. Here are the slides and the audios.Feel free to share!
2017 International Family Conference Feedback Survey
Thank you to everyone who completed the Foundation survey to provide feedback for our 2017 conference in Washington, DC. Over half of the attending families responded with details of what they liked and what could be done better. We will keep all of your statements in mind as we prepare for future events.
We asked for 3 things you learned at the conference that will help you to care for your MWS child. Not surprisingly, there were certain themes repeated:
- #1 response – Communication and Learning was mentioned by 20 respondents. We learned about devices, learning and teaching techniques, and most importantly to assume intelligence believing that your children can learn AND express themselves. Give them time, and don’t give up!
- #2 response – Bowel Management was mentioned by 14 respondents. Hope for progress in this area is universal. Every MWS family has a few memorable poop stories, and we learned that it is possible to make headway with bathroom training. This is truly a quality of life issue for all.
- #3 response – Seizures were mentioned by 12 respondents. We learned about testing for ESES, seizure medications, signs of seizures, and consequences of seizures for sleeping and cognitive processes.
- #4 response – Music Therapy was mentioned by 6 respondents. While we all know our MWS kids enjoy music, it was enlightening to learn about the therapeutic value of musical activities.
In a category unto itself were responses of feeling a part of a bigger family, having an understanding community, and not feeling alone with the struggles of MWS. The fellowship with other families who experience the same challenges brings so much hope to our lives!
The favorite parts of the conference were Interactions with other MWS families, the Workshops, and not surprisingly, meeting Dr. David Mowat and Dr. Meredith Wilson, our namesakes. We received mostly favorable responses on the conference cost relative to the value received. The Foundation calculates that it covered approximately 60% of the total conference cost from accumulated donations, which relieved some of the family expenses.
Many of you expressed willingness to serve on the Board of Directors in the future, which is much appreciated!
In the category of what could have been better we received many comments that parents of adults with MWS have some unique topics of interest that could be addressed. Also, the feedback was good regarding the Sibling Seminar, but the younger siblings could have benefitted from a special event for them as well. And finally, facilitated, structured discussions between parents who can share experiences with each other (as opposed to only being presented to) would be valuable.
The Mowat-Wilson Syndrome Foundation Board of Directors takes all of your feedback to heart. We were delighted with the attendance and enthusiasm for the conference, and feel that many strong friendships and bonds were formed. Thank you for your comments and suggestions, and we look forward to seeing you again!
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.
Las 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
