Archive for month: July, 2021
Fundraising News
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 […]
Meet the Researcher – Zoom Webinar Series
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, […]
MWS Researcher Highlight
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 […]
Rare Disease Advisory Councils
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 […]
Life Hacks for MWS families
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 […]
Caregiving Corner
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 […]
MWS Family of the Month: The Tolman Family
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, […]
