Released October 1, 2021 by Jodie Hughes, member of the MWSF Community Advisory Board Where it all began Our journey started many years before we became parents. I grew up in Torrance, CA and now reside in San Pedro, CA with my husband (Josh) of 9 years this October. We began dating back in 1993 […]
https://mowat-wilson.org/wp-content/uploads/2021/06/Family-of-the-month-page-0-e1624995516214.jpg200200Marcia Smithhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.pngMarcia Smith2021-09-30 18:04:242021-09-30 18:04:24MWS Family of the Month: The Hughes Family
Released October 1, 2021 Life Hacks for MWS families The members of our Community Advisory Board have a few suggestions to share: Don’t use a bed frame. Put the mattress on the floor to reduce falls Have plastic mats for your child to sit on throughout the house to reduce stains from potty accidents Cover […]
Released October 1, 2021 The MWSF Community Advisory Board meets every month, and in September, the discussion was all about developing a comprehensive and unified care team: If your child is in a children’s hospital and you are concerned about their care, you may be able to call for a “code blue”, requiring the advisory […]
Join us on Thursday, October 7th, 2021 at 11 am Eastern time as we host researcher, Sumantra Chatterjee, a Research Assistant Professor at the Centre for Human Genetics and Genomics in NYU Grossman School of Medicine, New York. Sumantra has trained both as a developmental biologist and a human geneticist studying complex congenital diseases. His work […]
Released September 1, 2021 Carolina Foresti, of our September Family of the Month, has a few life hacks to share: Duda often has a difficult time going to sleep and her OT suggested using a bed tent. Another family recommended the Safety Sleeper Duda uses a “personal dictionary” to help people understand her. As she is […]
Released September 1, 2021 The Early Days We always knew that Duda would be different. Duda had an ultrasound when we were 3 months pregnant; it showed abnormalities and although the amniocentesis test was inconclusive, our doctor told us that Duda had a syndrome. She was sure about that. From then on, we had ultrasounds […]
https://mowat-wilson.org/wp-content/uploads/2021/06/Family-of-the-month-page-0-e1624995516214.jpg200200Marcia Smithhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.pngMarcia Smith2021-09-01 13:08:362021-09-01 13:08:36MWS Family of the Month: The Foresti Family
Released September 1, 2021 The MWSF Community Advisory Board meets every month, and in August, the discussion was all about advice for caregivers: Don’t be afraid of the diagnosis It can be very scary to receive the MWS diagnosis, but there is a community here to support you. Seek support and information about MWS – […]
Run For MWS Virtual Fundraiser & Awareness We would like to inspire families around the world to run for MWS as a form of raising awareness and fundraising for the MWS Foundation. Here are the steps: Decide on the event type – single runner, a group run, a race in your town… Pick a date […]
https://mowat-wilson.org/wp-content/uploads/2021/08/RunForMWS-square-2.jpg255025404Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2021-08-21 19:03:092021-08-21 19:03:092021 Run For MWS – Register Today!
https://mowat-wilson.org/wp-content/uploads/2021/08/Revised-2021-MWS-Golf-Tournament-v3.jpg24201870Marcia Smithhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.pngMarcia Smith2021-07-30 11:30:222021-08-21 18:50:02Join us in November for our Annual Charity Golf Tournament!
2021 MWS Virtual Run Mark your calendar and get ready to put on your running shoes this fall. Every step you take makes a difference! The 2021 MWS run is a national effort that will involve runs all over the US during October & November 2021. The MWSF encourages individuals, groups and families to organize […]
Join us on Friday, September 3, 2021 at 7:00 pm Eastern Time as we host researcher, Dr. Andrea Conidi, Department of Cell Biology – Erasmus Medical Center Rotterdam (the Netherlands). Dr. Conidi has worked for the last 15 years in the ZEB2 field in the lab where ZEB2 has been identified. In the last 4 years, […]
Published August 1, 2021 Sumantra Chatterjee is a Research Assistant Professor at the Centre for Human Genetics and Genomics in NYU Grossman School of Medicine in New York. He has trained both as a developmental biologist and a human geneticist studying complex congenital diseases. His work on Hirschsprung disease uncovered how multiple genes and mutations are […]
published August 1, 2021 Rare Disease Advisory Councils (RDACs) give the rare disease community a voice because these councils are sanctioned by individual states. The first RDAC was created in North Carolina in 2015 and was made up of patients, caregivers, families and providers. Since then, RDACS have been sanctioned in other states. RDACs can […]
Published August 1, 2021 Using social stories to prepare your child for a new experience Does your child become anxious when experiencing new things? Social stories can be used to help familiarize your child with new experiences BEFORE they occur. A social story is a simple book that uses words and pictures to show what […]
Released August 1, 2021 One struggle that many caregivers have is that medical professionals don’t listen to them. This problem can occur often for families with a rare disease. It is important for caregivers to advocate for their loved one and for themselves – even though this can be a draining process. Here are some […]
Released August 1, 2021 Natalie was born healthy but by three months old, she was below her birth weight and deemed unable to thrive. She had a slight heart murmur that was fixed by device closure but was admitted to the hospital at 5 months old. Eight days later, the doctors prescribed a very specialized, […]
https://mowat-wilson.org/wp-content/uploads/2021/06/Family-of-the-month-page-0-e1624995516214.jpg200200Marcia Smithhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.pngMarcia Smith2021-07-27 11:01:322021-07-27 11:07:40MWS Family of the Month: The Tolman Family
The New MWS Mugs Are Here! #nevergiveupmug Start your day with a cup of tea or coffee and support the MWS Foundation. Our mugs are inspired by the #nevergiveup attitude of MWS children and their families. For only $10 each, a set of mugs makes a very special gift for families, caregivers, office staff, […]
https://mowat-wilson.org/wp-content/uploads/2021/07/MWSF-mug.jpg8008004Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2021-07-22 13:36:412021-07-22 14:21:03New #NeverGiveUpMug Now Available at the MWSF Store
Save the Date for 3 upcoming fundraisers 2021 MWS Virtual Run Mark your calendar and get ready to put on your running shoes this fall. Every step you take makes a difference! The 2021 MWS run is a national effort that will involve runs all over the US during October & November 2021. The MWSF […]
Background As 50% of people with significant developmental delay or moderate intellectual disability (ID) have facial features which can provide a clue to genetic diagnosis, the overall aim of the FaceMatch project is to develop a sensitive and specific computer-vision phenotyping tool to aid and enhance diagnosis. It achieves this by comparing the facial features […]
The MWS Matrix Portal is up and running! This portal is available only for MWS families. The MWS Foundation in partnership with Across Healthcare have created a customized health records portal for MWS patients to help patients and caregivers easily capture, track, and share information related to medications, symptoms, activities, and electronic health records. The […]
Using a visual schedule Visual schedules are prompts that can be used for different activities and tasks – for example, putting on shoes or getting dressed. There are many types of visual schedules that can be used: cards, strips, sheets, posters, baseball card holders, pocket charts and much more. Visual schedules have many benefits: break […]
Being a caregiver is often like being the “Lone Ranger”. It may be difficult to keep up with or reach out to family and friends – and it may feel like these relationships are fading. Generally, caregivers are more likely to feel isolated if they cannot leave their home, have experienced a major life change […]
We are excited to introduce our newly hired Executive Director Marcia Smith, DBA, MBA! Marcia is an experienced nonprofit professional that has led nonprofit programs and organizations for 20 years. Previously, she managed large HIV/AIDS programs, Behavioral Health contracts for a large hospital system, and helped start 2 small nonprofit organizations. Marcia graduated with her […]
John and Wendy are the parents of Christian and Justin Sell. Christian is 29 and was diagnosed with MWS at 23 ½. Justin is 26 and his brother’s biggest advocate. John is a member of the MWS Foundation board and he and his wife Wendy have made it their life’s devotion to support both their […]
https://mowat-wilson.org/wp-content/uploads/2021/06/Family-of-the-month-page-0-e1624995516214.jpg200200Marcia Smithhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.pngMarcia Smith2021-06-29 11:14:392021-06-29 11:44:43MWS Family of the Month: The Sell Family
HAVE YOU HEARD ABOUT “ABLE” ACCOUNTS? Forty-one states in the United States are now offering ABLE accounts which are tax-advantaged savings programs for individuals with disabilities. These accounts are designed to preserve eligibility for SSI and Medicaid. This is particularly important for individuals with disabilities who have legally become adults and must assure that their […]
New MWS Tees Just Dropped Raise Awareness and Look Cool The new t-shirts have just arrived in our online store. They are available in youth and adult sizes at $15 each. Let’s raise awareness about Mowat-Wilson Syndrome and look cool! Shop Now
https://mowat-wilson.org/wp-content/uploads/2021/02/MWSF-tshirt-3-order-today-1.png108010804Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2021-02-06 20:34:032021-07-22 13:37:46New T-shirts at the MWS Store
New Patient Portal for MWS Community Customized Health Records Platform The Mowat-Wilson Syndrome Foundation announced today that it has entered into a partnership with Across Healthcare to use its Matrix rare disease platform to create a customized health records portal for Mowat-Wilson Syndrome (MWS) patients. Matrix was designed by Across Healthcare to help patients […]
https://mowat-wilson.org/wp-content/uploads/2021/01/MWS-matrix.jpg8008004Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2021-01-25 10:52:382021-07-22 12:55:14Mowat-Wilson Syndrome Foundation Announces New Customized Patient Records Platform
Set Up a Giving Tuesday Fundraiser Fundraise From Home It has been a hectic year for all of us but despite the challenges we are thankful for many things we accomplished, including the first virtual MWS Conference. We would like to thank you for attending it live or watching the videos on YouTube. We hope […]
Virtual Conference Open to the Entire World OCT 10 | OCT 24 | NOV 7 | NOV 21 Our Houston conference may have been cancelled but we are happy to announce that we are presenting the speakers on a virtual platform where we can still see all families and interact while we listen to the […]
Mowat-Wilson Syndrome Growth Charts Male & Female | Height | Weight | BMI | Head Circumference Mowat–Wilson syndrome (MWS; OMIM #235730) is a genetic condition caused by heterozygous mutations or deletions of the ZEB2 gene. It is characterized by moderate-severe intellectual disability, epilepsy, Hirschsprung disease and multiple organ malformations of which congenital heart defects and […]
Run & Fundraise for the MWSF! Virtual Race | #RunforMWS | #OWM2020 | #StrongerTogether The Mowat-Wilson Syndrome Foundation has partnered with One World Strong to inspire runners of all ages and abilities to run anywhere, any distance on a date between September 7th and November 1st 2020. It’s a virtual race open to everyone! Are […]
Welcome to the inaugural Mowat-Wilson Syndrome Foundation Fitness Challenge! Shift your mindset from negative to positive in this unique time we’re living through together. Join us on a a 5-week challenge to move your body every day with 15 minutes of a fun physical activity of your choice. Please keep in mind the needs & […]
Guidelines and Recommendations for Families Affected by MWS The Mowat-Wilson Foundation has received a number of questions about how coronavirus disease 2019 (COVID-19) may affect individuals with MWS. We hope that you and your family are staying safe and healthy. During this time, the best source to turn to for information about your family member […]
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MWS Community Advisory Board Established. Members Selected. The MWS Foundation recently established our first Community Advisory Board (CAB). The idea behind the CAB is to put in place a more efficient process to gain input from the MWS community. We have selected 14 members (10 U.S. and 4 International) from the MWS community to begin […]
https://mowat-wilson.org/wp-content/uploads/2020/02/CAD-Logo-e1627673077885.jpg2002004Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2020-03-22 07:00:452020-03-22 11:27:42Meet the MWSF Community Advisory Board
COVID-19 Update The MWSF board has decided not to delay the inevitable. The 2020 International Conference is officially cancelled. As upsetting as this is, we feel that we must act now to allow everyone to move ahead with the necessary cancellation of travel plans, etc. Registrations will be refunded as soon as possible. Please bear […]
Support the MWS Foundation and Raise Awareness! Great Gifts for Families, Caregivers, Teachers and Therapists! The Mowat Wilson Syndrome Foundation is proud to announce the grand opening of the MWS Store featuring many options of products. Looking for a gift? Please support the Foundation by shopping at our store. Our initial inventory includes: T-shirts Polo […]
https://mowat-wilson.org/wp-content/uploads/2018/10/store-banner-SM.png7049464Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2019-12-01 14:25:412020-09-10 10:27:51MWSF Store Now Open!
Set Up a Giving Tuesday Fundraiser We Can Do More Together! GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. Facebook has announced a $7M matching for donations received on Tuesday, December 3rd on a first come, first serve basis. You can help raising […]
SIGN UP FOR AN EVENT NEAR YOU! One of the Mowat-Wilson Syndrome Foundation’s mission is to provide support to the families. Regional events are organized for families to get together to meet, greet and exchange experiences. We have found that these events are extremely valuable for our community. We would love to extend these regional get togethers to all […]
Caregiver Survey: Mowat-Wilson Syndrome The Mowat-Wilson Syndrome Foundation has partnered with suAzio to conduct a survey of Mowat-Wilson Syndrome caregivers like yourself. The survey has been developed in close collaboration with the MWSF to ensure the resulting survey feedback will assist the Foundation to better serve the MWS community.
Epilepsy & Seizures in Mowat-Wilson Syndrome March 7, 2019 – 8:00 pm EST Speaker: John Schreiber, MD Overview of seizures and epilepsy and how these manifest in MWS, with particular attention to neurological consequences and management.
SIGN UP FOR AN EVENT NEAR YOU! One of the Mowat-Wilson Syndrome Foundation’s mission is to provide support to the families. Regional events are organized for families to get together to meet, greet and exchange experiences. We have found that these events are extremely valuable for our community. We would love to extend these regional get togethers to all […]
2020 MWS International Family Conference June 25-27, 2020 – Houston, TX The MWS Foundation will host the 3rd International Family Conference on June 25-27, 2020 in Houston, Texas.
https://mowat-wilson.org/wp-content/uploads/2018/12/MWS-2020-Conf-Logo-Blue-1200.jpg93012004Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2018-12-20 13:18:202018-12-20 14:28:32MWS Foundation Announces 2020 Family Conference
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 […]
https://mowat-wilson.org/wp-content/uploads/2018/08/LobsforLove-square-1.png102910294Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2018-08-28 06:22:462020-09-10 10:27:52Lobs of Love Fundraiser
2018 Regional Events The Foundation hosted three great regional events in 2018. Regional events are informal events where the families get together in a relaxed and fun setting to exchange experiences and get to spend some time together.
As of March 1, 2018, the Mowat-Wilson Syndrome registry has over 133 participants involved at varying levels with the three current surveys. With the launch of the Growth Data survey we hope to be able to provide the valuable information necessary for the development of Mowat-Wilson Syndrome specific growth charts. Here are some comments from Dr. […]
https://mowat-wilson.org/wp-content/uploads/2018/03/MWSF-shareyourdata.jpg69910424Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2018-03-27 16:04:362018-05-17 16:33:27New Survey to Capture MWS Growth Data
All MWS families invited to a great night of music, friends and fun! The Mowat-Wilson Syndrome Foundation cordially invites friends, donors and anyone who loves good music to its fundraising concert to take place in Barre, VT on May 5th, 2018.
https://mowat-wilson.org/wp-content/uploads/2018/02/1964-theTribute-mws-1.jpg82215354Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2018-02-15 18:55:572020-09-10 10:27:531964.. The Tribute Concert to Benefit the Mowat-Wilson Syndrome Foundation
This study , published by the American College of Medical Genetics and Genomics, analyses clinical data for 87 patients with a molecularly confirmed diagnosis of MWS, including 62 previously reported patients and 25 unpublished cases, and compared them with patients previously reported by other authors. The data was obtained through collaborations involving clinicians from various countries. Such […]
https://mowat-wilson.org/wp-content/uploads/2018/02/MWS-study-87patients.jpg6276854Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2018-02-05 07:52:572018-02-05 07:54:19Research Article: Phenotype and Genotype of 87 Patients with MWS and Recommendations for Care
How the Sell family embraces their son’s Mowat-Wilson Syndrome Article by Kathy Bell, mother of Kevin You don’t have to spend much time with a person who has Mowat Wilson Syndrome to figure out that his or her love for life is key to who they are as individuals and how they bring us together […]
https://mowat-wilson.org/wp-content/uploads/2018/01/image1.png7209604Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2018-01-06 08:24:472018-01-06 09:22:06Bringing Community Together with a MWS Approach to Life
The Mowat-Wilson Syndrome Foundation was the grand winner on Food Network’s Chopped on its Grand Holiday episode aired on December 5th, 2017. Chef Adam Greenberg, a three-time winner on Chopped, won the battle over three other undefeated competitors. What a great show! Adam chose the MWS Foundation to receive the $10,000 grand prize. Adam’s sister, Katie Fineberg, is a director […]
https://mowat-wilson.org/wp-content/uploads/2017/11/MWSF-PatientRegistry-logo.png80010004Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2017-11-06 15:24:382018-02-05 08:05:50Mowat-Wilson Syndrome Patient Registry One Year Anniversary
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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 […]
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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 […]
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 […]
The Mowat-Wilson Syndrome Foundation is pleased to report on the significant progress being made with the Mowat-Wilson Syndrome Patient Registry. The registry was launched back in November, 2016. Here is what Dr. Margaret Adam said at the time. “As is true for many rare genetic conditions, our ability to collect clinically relevant information that can […]
The MWS Foundation had been looking for some student volunteers to help with the design and conversion of our website to a new platform. We were able to make contact with Professor John Thacher at Gwinnet Technical College in Atlanta Georgia. Professor Thacher runs an upper level class that puts students in his class in […]
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 […]
https://mowat-wilson.org/wp-content/uploads/2016/11/Rebecca-2016-cropped-sm.png3248564Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2016-11-26 09:00:552016-11-26 16:38:32Mowat-Wilson Syndrome Foundation Joins the Global #GivingTuesday Movement Pledges to continue to support this rare community and their families.
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, […]
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.
https://mowat-wilson.org/wp-content/uploads/2016/08/2016-MWS-NWMedicalForum.png6366364Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2016-10-15 19:08:342016-10-22 14:07:37Watch the Seattle Medical Forum on Facebook
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 […]
https://mowat-wilson.org/wp-content/uploads/2016/08/genetic-alliance-logo-square.png5005004Foundationhttps://mowat-wilson.org/wp-content/uploads/2016/07/MWS-logo-final-340-1.png4Foundation2016-08-16 02:40:042016-10-05 01:17:45Mowat-Wilson Syndrome Foundation Awarded Grant Through Genetic Alliance
MWS Family of the Month: The Hughes Family
/in News /by Marcia SmithReleased October 1, 2021 by Jodie Hughes, member of the MWSF Community Advisory Board Where it all began Our journey started many years before we became parents. I grew up in Torrance, CA and now reside in San Pedro, CA with my husband (Josh) of 9 years this October. We began dating back in 1993 […]
Life Hacks for MWS families
/in News /by Marcia SmithReleased October 1, 2021 Life Hacks for MWS families The members of our Community Advisory Board have a few suggestions to share: Don’t use a bed frame. Put the mattress on the floor to reduce falls Have plastic mats for your child to sit on throughout the house to reduce stains from potty accidents Cover […]
Caregiving Corner
/in News /by Marcia SmithReleased October 1, 2021 The MWSF Community Advisory Board meets every month, and in September, the discussion was all about developing a comprehensive and unified care team: If your child is in a children’s hospital and you are concerned about their care, you may be able to call for a “code blue”, requiring the advisory […]
Meet the Researcher – Zoom Webinar Series
/in Events, Frontpage Article, News /by Marcia SmithJoin us on Thursday, October 7th, 2021 at 11 am Eastern time as we host researcher, Sumantra Chatterjee, a Research Assistant Professor at the Centre for Human Genetics and Genomics in NYU Grossman School of Medicine, New York. Sumantra has trained both as a developmental biologist and a human geneticist studying complex congenital diseases. His work […]
Life Hacks for MWS families
/in News /by Marcia SmithReleased September 1, 2021 Carolina Foresti, of our September Family of the Month, has a few life hacks to share: Duda often has a difficult time going to sleep and her OT suggested using a bed tent. Another family recommended the Safety Sleeper Duda uses a “personal dictionary” to help people understand her. As she is […]
MWS Family of the Month: The Foresti Family
/in News /by Marcia SmithReleased September 1, 2021 The Early Days We always knew that Duda would be different. Duda had an ultrasound when we were 3 months pregnant; it showed abnormalities and although the amniocentesis test was inconclusive, our doctor told us that Duda had a syndrome. She was sure about that. From then on, we had ultrasounds […]
Caregiving Corner
/in News /by Marcia SmithReleased September 1, 2021 The MWSF Community Advisory Board meets every month, and in August, the discussion was all about advice for caregivers: Don’t be afraid of the diagnosis It can be very scary to receive the MWS diagnosis, but there is a community here to support you. Seek support and information about MWS – […]
2021 Run For MWS – Register Today!
/in Events, Frontpage Article, News /by 4FoundationRun For MWS Virtual Fundraiser & Awareness We would like to inspire families around the world to run for MWS as a form of raising awareness and fundraising for the MWS Foundation. Here are the steps: Decide on the event type – single runner, a group run, a race in your town… Pick a date […]
Join us in November for our Annual Charity Golf Tournament!
/in News, Uncategorized /by Marcia SmithFundraising News
/in News /by Marcia Smith2021 MWS Virtual Run Mark your calendar and get ready to put on your running shoes this fall. Every step you take makes a difference! The 2021 MWS run is a national effort that will involve runs all over the US during October & November 2021. The MWSF encourages individuals, groups and families to organize […]
Meet the Researcher – Zoom Webinar Series
/in News /by Marcia SmithJoin us on Friday, September 3, 2021 at 7:00 pm Eastern Time as we host researcher, Dr. Andrea Conidi, Department of Cell Biology – Erasmus Medical Center Rotterdam (the Netherlands). Dr. Conidi has worked for the last 15 years in the ZEB2 field in the lab where ZEB2 has been identified. In the last 4 years, […]
MWS Researcher Highlight
/in News /by Marcia SmithPublished August 1, 2021 Sumantra Chatterjee is a Research Assistant Professor at the Centre for Human Genetics and Genomics in NYU Grossman School of Medicine in New York. He has trained both as a developmental biologist and a human geneticist studying complex congenital diseases. His work on Hirschsprung disease uncovered how multiple genes and mutations are […]
Rare Disease Advisory Councils
/in News /by Marcia Smithpublished August 1, 2021 Rare Disease Advisory Councils (RDACs) give the rare disease community a voice because these councils are sanctioned by individual states. The first RDAC was created in North Carolina in 2015 and was made up of patients, caregivers, families and providers. Since then, RDACS have been sanctioned in other states. RDACs can […]
Life Hacks for MWS families
/in News /by Marcia SmithPublished August 1, 2021 Using social stories to prepare your child for a new experience Does your child become anxious when experiencing new things? Social stories can be used to help familiarize your child with new experiences BEFORE they occur. A social story is a simple book that uses words and pictures to show what […]
Caregiving Corner
/in News, Uncategorized /by Marcia SmithReleased August 1, 2021 One struggle that many caregivers have is that medical professionals don’t listen to them. This problem can occur often for families with a rare disease. It is important for caregivers to advocate for their loved one and for themselves – even though this can be a draining process. Here are some […]
MWS Family of the Month: The Tolman Family
/in News /by Marcia SmithReleased August 1, 2021 Natalie was born healthy but by three months old, she was below her birth weight and deemed unable to thrive. She had a slight heart murmur that was fixed by device closure but was admitted to the hospital at 5 months old. Eight days later, the doctors prescribed a very specialized, […]
New #NeverGiveUpMug Now Available at the MWSF Store
/in Frontpage Article, Merchandise, News /by 4FoundationThe New MWS Mugs Are Here! #nevergiveupmug Start your day with a cup of tea or coffee and support the MWS Foundation. Our mugs are inspired by the #nevergiveup attitude of MWS children and their families. For only $10 each, a set of mugs makes a very special gift for families, caregivers, office staff, […]
Fundraising News
/in News /by Marcia SmithSave the Date for 3 upcoming fundraisers 2021 MWS Virtual Run Mark your calendar and get ready to put on your running shoes this fall. Every step you take makes a difference! The 2021 MWS run is a national effort that will involve runs all over the US during October & November 2021. The MWSF […]
The FaceMatch Initiative
/in News /by Marcia SmithBackground As 50% of people with significant developmental delay or moderate intellectual disability (ID) have facial features which can provide a clue to genetic diagnosis, the overall aim of the FaceMatch project is to develop a sensitive and specific computer-vision phenotyping tool to aid and enhance diagnosis. It achieves this by comparing the facial features […]
The MWS Matrix Portal
/in News /by Marcia SmithThe MWS Matrix Portal is up and running! This portal is available only for MWS families. The MWS Foundation in partnership with Across Healthcare have created a customized health records portal for MWS patients to help patients and caregivers easily capture, track, and share information related to medications, symptoms, activities, and electronic health records. The […]
Life Hacks for MWS families
/in News /by Marcia SmithUsing a visual schedule Visual schedules are prompts that can be used for different activities and tasks – for example, putting on shoes or getting dressed. There are many types of visual schedules that can be used: cards, strips, sheets, posters, baseball card holders, pocket charts and much more. Visual schedules have many benefits: break […]
Caregiving Corner
/in News /by Marcia SmithBeing a caregiver is often like being the “Lone Ranger”. It may be difficult to keep up with or reach out to family and friends – and it may feel like these relationships are fading. Generally, caregivers are more likely to feel isolated if they cannot leave their home, have experienced a major life change […]
Exciting news at MWSF!
/in News /by Marcia SmithWe are excited to introduce our newly hired Executive Director Marcia Smith, DBA, MBA! Marcia is an experienced nonprofit professional that has led nonprofit programs and organizations for 20 years. Previously, she managed large HIV/AIDS programs, Behavioral Health contracts for a large hospital system, and helped start 2 small nonprofit organizations. Marcia graduated with her […]
MWS Family of the Month: The Sell Family
/in News /by Marcia SmithJohn and Wendy are the parents of Christian and Justin Sell. Christian is 29 and was diagnosed with MWS at 23 ½. Justin is 26 and his brother’s biggest advocate. John is a member of the MWS Foundation board and he and his wife Wendy have made it their life’s devotion to support both their […]
ABLE Accounts For MWS Individuals
/in News, Useful Information /by 4FoundationHAVE YOU HEARD ABOUT “ABLE” ACCOUNTS? Forty-one states in the United States are now offering ABLE accounts which are tax-advantaged savings programs for individuals with disabilities. These accounts are designed to preserve eligibility for SSI and Medicaid. This is particularly important for individuals with disabilities who have legally become adults and must assure that their […]
New T-shirts at the MWS Store
/in Merchandise, News /by 4FoundationNew MWS Tees Just Dropped Raise Awareness and Look Cool The new t-shirts have just arrived in our online store. They are available in youth and adult sizes at $15 each. Let’s raise awareness about Mowat-Wilson Syndrome and look cool! Shop Now
Mowat-Wilson Syndrome Foundation Announces New Customized Patient Records Platform
/in Frontpage Article, News /by 4FoundationNew Patient Portal for MWS Community Customized Health Records Platform The Mowat-Wilson Syndrome Foundation announced today that it has entered into a partnership with Across Healthcare to use its Matrix rare disease platform to create a customized health records portal for Mowat-Wilson Syndrome (MWS) patients. Matrix was designed by Across Healthcare to help patients […]
2020 Giving Tuesday – December 1st
/in News /by 4FoundationSet Up a Giving Tuesday Fundraiser Fundraise From Home It has been a hectic year for all of us but despite the challenges we are thankful for many things we accomplished, including the first virtual MWS Conference. We would like to thank you for attending it live or watching the videos on YouTube. We hope […]
2020 Mowat-Wilson Syndrome Virtual Conference
/in Events, News /by 4FoundationVirtual Conference Open to the Entire World OCT 10 | OCT 24 | NOV 7 | NOV 21 Our Houston conference may have been cancelled but we are happy to announce that we are presenting the speakers on a virtual platform where we can still see all families and interact while we listen to the […]
Mowat-Wilson Syndrome Growth Charts
/in Frontpage Article, News, Research /by 4FoundationMowat-Wilson Syndrome Growth Charts Male & Female | Height | Weight | BMI | Head Circumference Mowat–Wilson syndrome (MWS; OMIM #235730) is a genetic condition caused by heterozygous mutations or deletions of the ZEB2 gene. It is characterized by moderate-severe intellectual disability, epilepsy, Hirschsprung disease and multiple organ malformations of which congenital heart defects and […]
Run & Fundraise For MWS – Sep 7th – Nov 1st
/in News /by 4FoundationRun & Fundraise for the MWSF! Virtual Race | #RunforMWS | #OWM2020 | #StrongerTogether The Mowat-Wilson Syndrome Foundation has partnered with One World Strong to inspire runners of all ages and abilities to run anywhere, any distance on a date between September 7th and November 1st 2020. It’s a virtual race open to everyone! Are […]
#MoveYourBodyforMWS – Fun Fitness Challenge
/in News /by 4FoundationWelcome to the inaugural Mowat-Wilson Syndrome Foundation Fitness Challenge! Shift your mindset from negative to positive in this unique time we’re living through together. Join us on a a 5-week challenge to move your body every day with 15 minutes of a fun physical activity of your choice. Please keep in mind the needs & […]
Impact of COVID-19 in MWS
/in Frontpage Article, News /by 4FoundationGuidelines and Recommendations for Families Affected by MWS The Mowat-Wilson Foundation has received a number of questions about how coronavirus disease 2019 (COVID-19) may affect individuals with MWS. We hope that you and your family are staying safe and healthy. During this time, the best source to turn to for information about your family member […]
Meet the MWSF Community Advisory Board
/in Frontpage Article, News /by 4FoundationMWS Community Advisory Board Established. Members Selected. The MWS Foundation recently established our first Community Advisory Board (CAB). The idea behind the CAB is to put in place a more efficient process to gain input from the MWS community. We have selected 14 members (10 U.S. and 4 International) from the MWS community to begin […]
Conference Cancellation
/in Frontpage Article, News /by 4FoundationCOVID-19 Update The MWSF board has decided not to delay the inevitable. The 2020 International Conference is officially cancelled. As upsetting as this is, we feel that we must act now to allow everyone to move ahead with the necessary cancellation of travel plans, etc. Registrations will be refunded as soon as possible. Please bear […]
MWSF Store Now Open!
/in Frontpage Article, News /by 4FoundationSupport the MWS Foundation and Raise Awareness! Great Gifts for Families, Caregivers, Teachers and Therapists! The Mowat Wilson Syndrome Foundation is proud to announce the grand opening of the MWS Store featuring many options of products. Looking for a gift? Please support the Foundation by shopping at our store. Our initial inventory includes: T-shirts Polo […]
2019 Giving Tuesday
/in Frontpage Article, News /by 4FoundationSet Up a Giving Tuesday Fundraiser We Can Do More Together! GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. Facebook has announced a $7M matching for donations received on Tuesday, December 3rd on a first come, first serve basis. You can help raising […]
2019 MWS Regional Events
/in Events, Frontpage Article, News /by 4FoundationSIGN UP FOR AN EVENT NEAR YOU! One of the Mowat-Wilson Syndrome Foundation’s mission is to provide support to the families. Regional events are organized for families to get together to meet, greet and exchange experiences. We have found that these events are extremely valuable for our community. We would love to extend these regional get togethers to all […]
Survey: Calling All MWS Caregivers!
/in Frontpage Article, News, Research /by 4FoundationCaregiver Survey: Mowat-Wilson Syndrome The Mowat-Wilson Syndrome Foundation has partnered with suAzio to conduct a survey of Mowat-Wilson Syndrome caregivers like yourself. The survey has been developed in close collaboration with the MWSF to ensure the resulting survey feedback will assist the Foundation to better serve the MWS community.
Webinar: Epilepsy & Seizures – Watch Now!
/in Events, Frontpage Article, News /by 4FoundationEpilepsy & Seizures in Mowat-Wilson Syndrome March 7, 2019 – 8:00 pm EST Speaker: John Schreiber, MD Overview of seizures and epilepsy and how these manifest in MWS, with particular attention to neurological consequences and management.
2019 MWS Regional Events
/in Events, Frontpage Article, News /by 4FoundationSIGN UP FOR AN EVENT NEAR YOU! One of the Mowat-Wilson Syndrome Foundation’s mission is to provide support to the families. Regional events are organized for families to get together to meet, greet and exchange experiences. We have found that these events are extremely valuable for our community. We would love to extend these regional get togethers to all […]
MWS Foundation Announces 2020 Family Conference
/in Events, Frontpage Article, News /by 4Foundation2020 MWS International Family Conference June 25-27, 2020 – Houston, TX The MWS Foundation will host the 3rd International Family Conference on June 25-27, 2020 in Houston, Texas.
Lobs of Love Fundraiser
/in Events, News /by 4FoundationLOBS 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 […]
2018 MWS Regional Events
/in Events, News /by 4Foundation2018 Regional Events The Foundation hosted three great regional events in 2018. Regional events are informal events where the families get together in a relaxed and fun setting to exchange experiences and get to spend some time together.
New Survey to Capture MWS Growth Data
/in Frontpage Article, News, Registry /by 4FoundationAs of March 1, 2018, the Mowat-Wilson Syndrome registry has over 133 participants involved at varying levels with the three current surveys. With the launch of the Growth Data survey we hope to be able to provide the valuable information necessary for the development of Mowat-Wilson Syndrome specific growth charts. Here are some comments from Dr. […]
1964.. The Tribute Concert to Benefit the Mowat-Wilson Syndrome Foundation
/in Events, News /by 4FoundationAll MWS families invited to a great night of music, friends and fun! The Mowat-Wilson Syndrome Foundation cordially invites friends, donors and anyone who loves good music to its fundraising concert to take place in Barre, VT on May 5th, 2018.
Research Article: Phenotype and Genotype of 87 Patients with MWS and Recommendations for Care
/in Frontpage Article, News, Research, Research Reports /by 4FoundationThis study , published by the American College of Medical Genetics and Genomics, analyses clinical data for 87 patients with a molecularly confirmed diagnosis of MWS, including 62 previously reported patients and 25 unpublished cases, and compared them with patients previously reported by other authors. The data was obtained through collaborations involving clinicians from various countries. Such […]
Bringing Community Together with a MWS Approach to Life
/in Frontpage Article, MWS Stories, News /by 4FoundationHow the Sell family embraces their son’s Mowat-Wilson Syndrome Article by Kathy Bell, mother of Kevin You don’t have to spend much time with a person who has Mowat Wilson Syndrome to figure out that his or her love for life is key to who they are as individuals and how they bring us together […]
Mowat-Wilson Syndrome Foundation Awarded $10K, Food Network Chopped, Grand Holiday Prize
/in Frontpage Article, News /by 4FoundationThe Mowat-Wilson Syndrome Foundation was the grand winner on Food Network’s Chopped on its Grand Holiday episode aired on December 5th, 2017. Chef Adam Greenberg, a three-time winner on Chopped, won the battle over three other undefeated competitors. What a great show! Adam chose the MWS Foundation to receive the $10,000 grand prize. Adam’s sister, Katie Fineberg, is a director […]
Mowat-Wilson Syndrome Patient Registry One Year Anniversary
/in Frontpage Article, News, Registry /by 4Foundation2017 Conference Workshops Now Available on YouTube
/in Events, Frontpage Article, News /by 4FoundationWe 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
/in Events, Frontpage Article, News /by 4FoundationThank 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 […]
Television interview helps families find Mowat-Wilson Syndrome
/in Frontpage Article, News /by 4FoundationWith 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 […]
II Annual Houston Rare Disease Day
/in Frontpage Article, News /by 4FoundationBy 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 […]
Mowat-Wilson Syndrome Patient Registry Update – February 2017
/in News, Registry /by 4FoundationThe Mowat-Wilson Syndrome Foundation is pleased to report on the significant progress being made with the Mowat-Wilson Syndrome Patient Registry. The registry was launched back in November, 2016. Here is what Dr. Margaret Adam said at the time. “As is true for many rare genetic conditions, our ability to collect clinically relevant information that can […]
Thank you Gwinnet Technical College!
/in News /by 4FoundationThe MWS Foundation had been looking for some student volunteers to help with the design and conversion of our website to a new platform. We were able to make contact with Professor John Thacher at Gwinnet Technical College in Atlanta Georgia. Professor Thacher runs an upper level class that puts students in his class in […]
Mowat-Wilson Syndrome Foundation Joins the Global #GivingTuesday Movement Pledges to continue to support this rare community and their families.
/in Frontpage Article, News /by 4FoundationLas 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 […]
Mowat-Wilson Syndrome Patient Registry to Launch November 7, 2016.
/in Grant, News, Registry /by 4FoundationThe 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, […]
Watch the Seattle Medical Forum on Facebook
/in News /by 4FoundationOctober 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
/in Grant, News, Registry /by 4FoundationThe 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 […]