2019 Giving Tuesday

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 money for the Mowat-Wilson Foundation by setting up a Giving Tuesday campaign on your Facebook page.

Step 1 – Create the fundraiser on Facebook (click below to learn how)
Step 2 – Ask your family and friends to donate on Tuesday morning to qualify for the match.

 

Just Want To Make a 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!

MWSF Store Now Open!

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 shirts
  • Hoods
  • Hats
  • Drinkware
  • Tote bag
  • Car magnet
  • Emergency Window Decal for non-verbal/special needs
  • Bracelets

 

store-banner

2019 MWS Regional Events

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 regions in North America. Please contact us if you are interested in hosting  a family regional event.
Read more

Survey: Calling All MWS Caregivers!

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. Read more

Webinar: Epilepsy & Seizures – Watch Now!

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. Read more

2019 MWS Regional Events

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 regions in North America. Please contact us if you are interested in hosting  a family regional event.
Read more

Mowat-Wilson Syndrome and Asplenia

Recommendation for MWS Patients to Get Evaluated for Absent Spleen

Recently, several reports have highlighted a rare finding in individuals with Mowat-Wilson syndrome (MWS), namely absent or missing spleen. The spleen is an organ that filters the blood and can help fight certain types of bacterial infections. The spleen is located in the left upper abdomen but frequently not felt on physical examination. Individuals who do not have a spleen can live long and healthy lives, but may be at increased risk for certain infections. Additionally, individuals without a spleen should be vaccinated against certain bacteria that can cause serious infections.

Now that we are aware of this finding, we recommend that all individuals with MWS be evaluated for an absent spleen. The test is easy to do and noninvasive. The best way to look for the spleen is through an ultrasound, an imaging technique that does not have any known side effects. Many individuals with MWS may have had this study done in the past. For example, if a person had an ultrasound scan to look at the kidneys, the spleen may have been imaged as well. If a person has had an “abdominal ultrasound” in the past, this should have evaluated for the presence of a spleen. If only a “renal ultrasound” was done, this may not have looked for the presence of a spleen. Please talk with your healthcare provider about whether an ultrasound that looks for the spleen has already been done. Absence of the spleen in MWS is typically something someone would have from birth. If a spleen was seen on ultrasound at some point (even years ago), then a person does not need to have the ultrasound repeated, unless that person’s healthcare provider is concerned the person has symptoms of a non-working spleen. The spleen can stop working for reasons unrelated to MWS, but people with MWS are not known to be at increased risk to have this particular complication.