Day of Dravet Regional Workshops

By |2019-05-20T16:37:36-05:00May 24th, 2019|Categories: Decoding Dravet Blog|

Save the Date for the 2019 Day of Dravet Workshop near you! Recognizing that it was often difficult and/or too expensive for families to travel to DSF's family & professional biennial conference, we wanted to offer another educational opportunity that would be easier for our community to access. In 2017, as an offshoot [...]

Building Your Child’s Team of Medical Professionals

By |2019-05-13T06:57:04-05:00May 17th, 2019|Categories: Decoding Dravet Blog|

Your relationship to your child’s medical team has everything to do with their health and well-being. For many years, patients and families affected by Dravet syndrome (DS) felt alone and unheard. They struggled finding medical specialists who could not only recognize and diagnosis the disease, but also knew the best ways to approach [...]

A Dravet Mother’s Day

By |2019-05-10T08:29:40-05:00May 10th, 2019|Categories: Decoding Dravet Blog|

A Dravet Mother's Day Guest Post by Wendy Fry This week's guest blog post comes from Wendy Fry. She is mom to Penny, 4, who is living with Dravet syndrome. Penny experienced her first seizure at 8 months. After Penny's diagnosis, Wendy began fundraising and looking for ways she could help Penny and [...]

June is Dravet Syndrome Awareness Month!

By |2019-05-13T13:54:47-05:00May 3rd, 2019|Categories: Decoding Dravet Blog|

Help DSF raise awareness, as well as research funding, during Dravet Awareness Month. Many hurdles exist in the Dravet syndrome (DS) community – including an understanding of the syndrome as well as the funds needed to research and find better treatment options. When you have a rare disease the largest setback for progress [...]

DSF’s Research Grant Awards Program

By |2019-05-13T13:58:12-05:00April 26th, 2019|Categories: Decoding Dravet Blog|

Learn more about DSF's Research Grant Program. Dr. Jack Parent of the University of Michigan gave DSF invaluable advice and guidance in our early days. He also recognized and applauded our efforts, and his backing and support gave us credibility within the medical and research communities as the organization grew. He helped us [...]

DSF Patient Assistance Programs

By |2019-05-13T14:00:42-05:00April 19th, 2019|Categories: Decoding Dravet Blog|

Learn more about the Patient Assistance Programs offered by DSF. Dravet Syndrome Foundation (DSF) has developed and offers a variety of programs that serve the needs of our patients and professionals. Two of the programs that are particularly valuable to our patient community are our Patient Assistance Grant Program and our Disaster Relief [...]

Accessing Recently FDA-approved Treatments for Dravet Syndrome

By |2019-05-13T14:05:05-05:00April 12th, 2019|Categories: Decoding Dravet Blog|

When you have exhausted all possibilities, remember this: You haven't. -Thomas Edison Rare diseases are difficult to diagnose, research, and treat. Even though more than 7,000 rare diseases have been identified, only about 5% of those have indicated treatments. Our community was extremely fortunate to see not one, but two treatments receive FDA-approval [...]

Self Care is Not Selfish

By |2019-05-13T14:06:52-05:00April 5th, 2019|Categories: Decoding Dravet Blog|

If you get tired, learn to rest, not to quit. -Banksy Caring for a child or adult with Dravet syndrome (DS) is challenging. It is a lot of work, mentally and physically. Our caregiver community frequently talks about feelings of isolation, depression about the diagnosis, and anxiety over what their child’s future looks [...]

The Importance of Fundraising for Research

By |2019-05-13T14:08:12-05:00March 22nd, 2019|Categories: Decoding Dravet Blog|

There is no power for change greater than a community discovering what it cares about. -Margaret J. Wheatley Dravet Syndrome Foundation (DSF) offers programs that bring great value to the Dravet community through three primary pillars - Research; Professional Education; and Caregiver & Patient Support. Our community has done many important things that [...]