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Lobs of Love Fundraiser

LOBS OF LOVE EVENT AT MILFORD INDOOR TENNIS TO BENEFIT THE MOWAT-WILSON SYNDROME FOUNDATION

Milford, CT – A fun evening of tennis and prizes is on tap for September 29 at Milford Indoor Tennis (580 Bridgeport Ave.). The Lobs of Love Event will benefit the Mowat-Wilson Syndrome Foundation.

Mowat-Wilson Syndrome is a rare but extremely serious condition found in many countries and across ethnic groups. In Connecticut, five children – two of whom live in Milford – are known to be affected by the disorder. Experts estimate that hundreds of U.S. children are affected by Mowat-Wilson. The Foundation is raising funds to hold a medical conference on the syndrome in 2020. Significant signs of the syndrome include distinctive facial features, intellectual disability, delayed development and other birth defects.

Lobs of Love attendees will enjoy a fun-filled evening featuring round robin mixed doubles and serving competitions. A silent auction and raffles are included, as well as appetizers and drinks. Event organizers are seeking donations of goods or services as well as financial contributions.

Current Platinum Sponsors include: Milford Indoor Tennis, The Keeney Manufacturing Company, Rocco Property Management, Pyramid Real Estate Group and Fairfield County Bank. For sponsorships, donations, or additional information, please contact Laura Chrysostomo at laurac@mowat-wilson.org

LobsforLove-flyer

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

2017 International Family Conference

Jun 29 to July 01, 2017 – Washington D.C.

Three days filled with lectures, workshops, Q&A sessions and activities for parents, individuals with Mowat-Wilson Syndrome and siblings. Guest speakers include Dr. David Mowat and Dr. Margaret Wilson among many other specialists that will speak on topics that affect most families like: Bowel Management, Mobility, Adaptive Technologies, Advocacy, Grieving and Stages of Acceptance, Epilepsy, etc.

LOCATION/HOTEL

The conference will be held at the Crystal Gateway Marriott Hotel in Arlington, VA. Rooms will be blocked for the families at a discounted rate. We will let you know when reservations open.

AIRPORTS

For domestic flights use Reagan National Airport in Arlington, VA and take advantage of free shuttles to the hotel (courtesy of the Marriott). For international flights the best option is the Baltimore/Washington Airport (BWI).

REGISTRATION

Early Registration Discount available until March 31, 2017. Registration closes May 31, 2017 or when venue full capacity is reached.
Click here to Register.

2016 Seattle Medical Forum

October 15, 2016 – Seattle, WA

The Medical Forum will be an informative program for families and medical students. The morning program will include updates from the doctors on the various studies that are being conducted on Mowat-Wilson Syndrome. Doctors Wilson and Adam will conduct a clinic in the afternoon for the medical students in attendance. There will be additional speakers in the afternoon.

Due to the limitation of 30 Mowat-Wilson Syndrome patients, we will give preference to the families living on the West Coast (west of the Rocky Mountains). The other families will be placed on a waiting list and selected on a lottery basis if necessary.

Contact debyc@mowat-wilson.org for additional information

Download the 2016 Mowat-Wilson Syndrome Seattle Forum Program.

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.

2016 Atlanta Family Pool Party & BBQ

August 20, 2016 – Atlanta, GA
1:00 pm – 6:00 pm

Location

Al & Susan Triunfo’s place
901 Dogwood Trail, Tyrone, GA 30290

Join us for a fun filled day! Swimming pool with basketball hoop, putting green, corn hole, bocce ball and other games. BBQ served around 4 p.m. Hamburgers, hot dogs, sides & fixins! Please bring your own towels. Hope to see you there!

Contact susant@mowat-wilson.org for additional information.

Registration has closed.

2016 Annual Family Beach Day – CT

August 21, 2016 – Camp Harkness – Waterford, CT
10:30 am – 3:00 pm

Camp Harkness - Waterford, CT

Camp Harkness – Waterford, CT

The Mowat-Wilson Family Beach Day is an informal and relaxing day when families gather together to enjoy themselves and exchange experiences. Families must bring their own beach apparatus (umbrellas and tents are a must) and food easily eaten at the beach. There are bathrooms and showers.

For families arriving on Friday/Saturday we recommend staying at the Holiday Inn Express Mystic in Mystic, CT. The hotel offers free breakfast, microwave/fridge in the room and a pool with handicap lift. It is conveniently located across the street from the Mystic Village where the Mystic Aquarium is located. A group trip to the Aquarium is being planned for the Saturday afternoon.

Contact laurac@mowat-wilson.org for additional information.