Archive for year: 2020
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 you found them informative.
As Laura mentioned on session 3 of the Conference, Giving Tuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. We see this as a great opportunity for all MWS families to fundraise, and together we can raise funds to support families, research and awareness.
We invite you to join us fundraising for MWS!
How To Setup a Facebook Fundraiser
This is the easier way to fundraise, using the power of social media. Anyone using Facebook can do it in a few clicks. Encourage your friends and family members to create their own Facebook Fundraiser as well.
Click on the link below and choose “Mowat-Wilson Syndrome Foundation” as the non-profit to be benefited. All donations are sent directly to the Foundation.
Just Want To Make an Online Donation?
We thank you in advance for considering a donation for the Foundation. The money received will help us fulfill our mission to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education. Thank You!
Prefer to Mail a Check?
Some people still prefer to send in a check. We love that too! Here’s our address:
Mowat-Wilson Syndrome Foundation
4009 Tyler William Ln.
Las Vegas, NV 89130-2628
All donations to the Mowat-Wilson Syndrome Foundation are tax-deductible.
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 latest studies and research related to Mowat-Wilson Syndrome.
To accomodate the busy life of our families we carefully planned four two-hour sessions on Saturdays.
Simultaneous interpretation/translation to Spanish, French, Portuguese, Italian and German during the live event. The conference will be recorded in English and released on YouTube later.
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 urogenital anomalies are the most frequent ones. To date, a clear description of the physical development of MWS patients does not exist. The aim of this study is to provide up-to-date growth charts specific for infants and children with MWS. Charts for males and females aged from 0 to 16 years were generated using a total of 2865 measurements from 99 MWS patients of different ancestries. All data were collected through extensive collaborations with the Italian MWS association (AIMW) and the MWS Foundation. The GAMLSS package for the R statistical computing software was used to model the growth charts. Height, weight, body mass index (BMI) and head circumference were compared to those from standard international growth charts for healthy children.
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 you a runner? Need a challenge? This is a great opportunity. Pick a date, create a fundraiser for the MWSF and ask for your community support. Get your family together and run! Inspire local runners to run! Let us know and we will create a runner flyer to help you promote your event.
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 & capabilities of your loved one. Any movement is positive movement. Check with your doctor if you have any concerns.
How to Participate
Download the MWS Fitness Challenge Tracker and start moving!
Here are some activity ideas: Dance party, marching in place, bouncing a ball, relay race, playing tag, dance freeze, toe touches, jumping jacks, playing catch, twirling, and many more!
Share & connect with our Mowat-Wilson community by using #MoveYourBodyforMWS on Facebook or Instagram.
Once you complete the challenge send a photo of your tracker and the participant’s names to firstname.lastname@example.org. Celebrate with each other & be rewarded with a virtual certificate of accomplishment upon completion.
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 with MWS is your family member’s primary care physician, who will know your family member’s medical history, as well as local/state guidelines for protection against getting COVID-19.
The Mowat-Wilson Medical Advisory Board also realizes that many families are concerned about the risks of contracting COVID-19 and how this virus may affect their relatives with MWS differently. Individuals with underlying health conditions (including cardiovascular, pulmonary, and immune problems, to name a few) are thought to be at increased risk of having a more difficult time fighting off the virus, although age is also thought to be a factor, with individuals under age 20 years accounting for many fewer serious infections or deaths compared to those older than age 40 years. However, these are generalizations, and each individual is unique, as is the risk in each community based on local/geographic factors.
Many are wondering when it will be “safe” to return to some types of typical activities (i.e. going out in public, etc.). We encourage all families to be aware of their local/state/county/country guidelines regarding social distancing, the need to wear masks in public, and the slow reopening of businesses/schools. If an individual is unable to abide by the social distancing and/or mask requirements or recommendations, it may not be in their best interest to be about in larger public areas, even if those areas have been reopened. Additionally, individuals who explore their environment using their mouth (putting objects into their mouth) may have an increased risk of becoming infected with the virus if they are placed back into a daycare or school setting, particularly if that setting includes other individuals with special needs who also explore the environment using their mouth.
The medical factors that lead to a worse outcome are not completely known, although some underlying health conditions seems to predispose individuals to being sicker. While we do not know all factors that may lead to more severe illness or death, some factors that could increase this risk and are more specific to individuals with MWS are the following:
1. Those with a history of previous blood clots or clotting issues. This is rare in individuals with MWS.
2. Those with absent spleen or who have been told that their splenic function is not normal. Fortunately, most individuals with MWS do not have a known problem with their immune system.
3. Those with congenital heart defects; discussion of the actual heart defect and specific risks would need to take place in conjunction with the affected person’s primary care physician and cardiologist.
4. Any person with obesity (also, extremely uncommon in individuals with MWS).
5. Any person with baseline breathing issues (also rare in those with MWS who do not have a congenital heart defect).
Individuals with MWS may also be at increased risk for various types of “accidents” (including having a seizure, falling, etc.) that could put them in contact with first responders or other individuals in the general community who are trying to help. Before returning to more normal activities (school, daycare, day programs, etc.), it would be ideal for families to have a contingency plan in place on how to handle each risk-related event based on the individual’s risk factors and history and on how to address these issues with contact with others in the school setting and elsewhere. Then if “accidents” occur, there is a plan in place to address the individual’s needs without excessive exposure to others and the environment.
Many individuals with MWS have a history of seizures or currently have a seizure disorder that is treated with medication. Even if your affected family member does not have a history of seizures, we encourage you to read the statement below, as it applies to many individuals with chronic health conditions who may be taking prescription medication. The following is an excerpt from a statement put out by the American Epilepsy Society:
“The American Epilepsy Society (AES) urges its members and their patients to be aware and cautious while keeping the coronavirus disease 2019 (COVID-19) situation in perspective. In addition to monitoring US Centers for Disease Control and Prevention (CDC) statements and directives, healthcare providers (HCPs) should closely monitor statements and actions of state and local health departments.
Patients should be instructed to work with their HCP’s office and pharmacy to initiate prescription refills at least one week before they anticipate running out of medications for 30-day prescriptions and at least two weeks in advance for 90-day prescriptions. While not always possible under payer practices, where feasible and warranted by individual patient situations, HCPs may wish to consider writing 90-day rather than 30-day supplies of medications to ensure that patients have a sufficient quantity of medications on hand.
In a reminder of usual best practice, providers should encourage patients to work with their pharmacists to synchronize prescription refills of all medications, not just antiseizure medications. In addition, patients should be advised to discuss home delivery options with their pharmacy. These measures can minimize public exposure, in the event that public health authorities limit travel or public activities. Epilepsy centers and HCPs should also consider readiness for utilizing remote care options, if possible; i.e., telephone, telehealth, and electronic health record (EHR) messaging.
Viral illnesses may be a trigger for seizures for some, and patients should have an up-to-date plan for managing breakthrough seizures. If medications are involved in this plan, patients should ensure that they have a supply of these medications on hand, with expiration dates at least six months away.
Health professionals may wish to monitor drug shortages via the FDA Drug Shortages web page or the American Society of Health-System Pharmacists (ASHP) drug shortage tracking system which can now be integrated into EHR systems.
Additional advice for patients with epilepsy and their families is provided on the Epilepsy Foundation web page, Concerns about Coronavirus. AES will continue to monitor the impact on its members and their patients of the COVID-19 situation and will update information and guidance as needed.”
We know this is a stressful time for everyone and we hope that you and your family stay healthy.
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 serving a 2-year term. These CAB members will be asked to provide input/ideas/suggestions to the MWS Foundation thru participation in conference calls, email communications/surveys and individual one-on-one phone calls with Foundation Board Members. In order to do this, they will interact with their own networks within the MWS community to share information and gain feedback/input that can be shared with the MWS Foundation.
- Laura J Windsor – Clinton/Suitland, Maryland, USA
- Mallorie Brown – Westford, Massachusetts, USA
- Amanda Rice – Ammon, Idaho USA
- Jodie Hughes – San Pedro, CA, USA
- Erin Hawthorne – Long Beach, MS, USA
- Carrie Avila-Mooney – Renton, Washington, USA
- Dann Hauser – Medford, Oregon, USA
- Barb Andrews – Norwalk, Ohio, USA
- Jennifer Farrell – Chicopee, Massachusetts, USA.
- Kim Jachim-Mellenthin – Palos Park, Illinois, USA
- Carolina Foresti – Toronto, Ontario, Canada
- Shelley Clarke – New Zealand
- Sherran Mitchell – Myrtleford, Victoria, Australia.
- Rui Negrão – Lisbon, Portugal
Please join us in congratulating them and thanking them for supporting the MWS Foundation and helping us to better meet the needs of our MWS family.
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 with us as we work to develop a new date for our conference. For those of you who have booked travel, we will be working to come up with an official cancellation notice that may help when you contact your airline. Please email me at email@example.com
Mowat-Wilson Syndrome Foundation