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

Mowat-Wilson Syndrome Patient Registry to Launch November 7, 2016.

PEER

The Mowat-Wilson Syndrome Foundation is extremely pleased to announce that we are the recipient of a grant thru Genetic Alliance to establish a MWS patient registry! We will be using their Platform for Engaging Everyone Responsibly (PEER) to build and house the MWS patient registry.

“Go Live” date for the registry is Monday, November 7, 2016

 

Dr. Margaret Adam, MD, who is a member of the Mowat-Wilson Syndrome Foundation Medical Advisory Board, will serve as the primary scientific advisor for the MWS patient registry. Dr. Adam is Professor of Pediatrics, Division of Genetic Medicine at the University of Washington in Seattle, WA. Here is what Dr. Adam had to say about the registry.

“It is with great pleasure that I write this letter in support of the partnership between the Mowat-Wilson Syndrome (MWS) Foundation and the PEER platform. As a clinical geneticist, I have had the opportunity to both care for individuals with MWS and to participate in clinical research projects to help further our understanding of this condition. As is true for many rare genetic conditions, our ability to collect clinically relevant information that can help physicians provide excellent patient care is limited because each provider has only a small number of patients with the condition. Therefore, to further our knowledge of the breadth of the condition requires engagement of the involved community and a platform in which information can be securely and accurately entered and curated. This in turn will allow expert clinical researchers to extract important information and identify rare complications that will aid physicians who care for individuals with MWS. After reviewing the PEER platform, I feel that it is ideal for this endeavor. As a scientific advisor to the MWS Foundation, I look forward to working with them on implementing this platform and bringing it to the greater MWS community.”

PEER has received a number of awards and recognition including from the White House, Forbes Magazine and PCORI (the Patient-Centered Outcomes Research Institute).

Utilizing PEER to support our MWS patient registry provides some important benefits. Perhaps most important, it enables customization of sharing, privacy, and data access preferences. PEER puts decisions about sharing health information in the hands of parents or guardians. Some participants might decide to share everything with everyone, from medical records to contact information; while others might prefer to keep their data more private. PEER uses PrivacyLayer®, a technology service from PEER partner and technology provider Private Access, which allows individual decisions to be made concerning who can access their information. At present time, more than 30 communities and organizations are using PEER, and more than 10,000 people participate in it.

The process of participating in the MWS patient registry will be very user friendly. Each parent or guardian will be able to set up their own account. You will then enter health information through a number of different survey instruments. There is even a personal dashboard so you can track which surveys you have and have not completed. In addition, you have the ability to submit genetic test results and upload medical health records.

The registry is scheduled to launch Monday, November 7, 2016. If you are interested in learning more about PEER, please visit http://peerplatform.org/ or contact Al Triunfo, Director, MWSF at atriunfo@mowat-wilson.org

Watch the Seattle Medical Forum on Facebook

 

October 15, 2016

We will be streaming the Northeast Medical Forum live from Seattle on our Facebook page. After the event, we will be posting all videos for you to watch and share with your friends, families, doctors and therapists.

Download the 2016 Mowat-Wilson Syndrome Seattle Forum Program.

Mowat-Wilson Syndrome Foundation Awarded Grant Through Genetic Alliance

The Mowat-Wilson Syndrome Foundation is pleased to announce it was recently awarded a grant through Genetic Alliance, a leading nonprofit health advocacy organization, to establish a patient registry for individuals that have been diagnosed with Mowat-Wilson Syndrome (MWS). The grant will allow the Foundation to use Genetic Alliance’s Platform for Engaging Everyone Responsibly (PEER) to build and house the registry.

The registry will facilitate the capture of key medical, genetic, treatment and demographic data for MWS patients. This in turn will allow expert clinical researchers to extract important information, study genotype correlations to clinical outcomes and it will aid physicians who care for individuals with MWS.

“As is true for many rare genetic conditions, our ability to collect clinically relevant information that can help physicians provide excellent patient care is limited because each provider has only a small number of patients with the condition,” said Dr. Margaret Adam, Associate Professor of Pediatrics at the University of Washington Medical Center and member of the Mowat-Wilson Syndrome Foundation medical advisory board. “To further our knowledge of the breadth of MWS requires engagement of the involved community and a platform on which information can be securely and accurately entered and curated,” she said.

An important feature of PEER is that it is highly customizable and parents or guardians of MWS patients can set their own sharing, privacy and data access preferences.

The Foundation hopes to have the registry up and running by October 15, 2016 and is aiming to have 100 participants engaged with the registry within the first year.

MWS is a recently discovered syndrome (defined in 1998) and much is still being learned about the physical, behavioral and developmental issues associated with this rare genetic disorder. Major signs include distinctive facial features, intellectual disability, delayed development, intestinal disorders, seizures, congenital heart disease, agenesis of the corpus callosum, male genital abnormalities (hypospadias), and major expressive language difficulty. Most Mowat-Wilson children are non-verbal and experience delayed development of motor skills such as sitting, standing, and walking. Despite their many difficulties, MWS children typically have friendly and happy personalities, though they will require intense medical attention and personal care throughout their entire lives.

For more information on PEER click here.

For additional information, please contact Al Triunfo, Director, Mowat-Wilson Syndrome Foundation at al.triunfo2@gmail.com