An online Reuters article, published earlier today, and titled “New drugs, fresh hope for autism patients” along with the photographer’s blog entry, called “Living with Fragile X” and a Full Focus post, Reuters [...]
Julie Stutzman Development Manager Chicago Mom has Bragging Rights! Back in February, LINKS Leader Melissa Zolecki’s younger children were collecting pennies for four different charities, one of which was Autism. Her daughter, Paige, asked [...]
Make sure your sails are set for due course to Miami this summer! Ahoy! Check out the eXciting speakers and presentations line up. Anchor your hotel reservations today. Buoy your bank account (save $$) by [...]
Your answers will help give a better understanding of how Fragile X syndrome affects families and children What job opportunities are available to young adults with Fragile X syndrome? When do parents tell a daughter [...]
Julie Stutzman is the new Development Manager at the National Fragile X Foundation. If you have any questions regarding fundraisers or grants which benefit the Foundation, you can reach Julie at fundraisers@fragilex.org. I am thrilled [...]
Curious about what's going to be at the conference? Here are a few highlights: Keynote presentations by Elizabeth Berry-Kravis MD PhD, Kim Huber PhD, , Stephen Warren PhD, and Rick Guidotti of Positive Exposure [...]
Sarah "Mouse" Scharfenaker There are millions of great apps out there. Here are some guidelines as to how to pick 'em. What is your goal in using a specific app? Reinforcing/practicing concepts from therapies? Keep [...]
From the Executive Director Robert Miller Advocacy Day is over – but our Public Policy effort continues: Twenty-three of the twenty-five Fragile X clinics have met – but the work of the Fragile X Clinical [...]
With the bustle of the holiday season behind us, now is the perfect time to start planning a 2012 fundraiser! The NFXF relies on support from small events, and we look forward to assisting new [...]
Good news! The 2012 federal budget process has finally concluded, and Fragile X has emerged from the process with federal funding and programs intact. This was only because of the relationships we’ve nurtured and grown [...]
2011 Annual Fund Since 1984, the NFXF has made it a goal to always be looking forward. Whether we are providing support and information for a newly diagnosed family, advocating each year for federal funding [...]
As technology moves forward, there have become increasingly more ways to help your child learn and navigate their life. You may have heard of Apple, Android, and PC apps which can be useful to that [...]
Advocacy Day 2012 is just around the corner. The date is March 6-7, 2012 and as in prior years training will be held on Tuesday (March 6) from 1-5pm and Congressional visits will be scheduled [...]
Join the National Fragile X Foundation’s Executive Direct, Robert Miller and Coordinator of Support Services, Jayne Dixon Weber as they interview LINKS Group Leader and Fragile X parent Laureen Majeske and Developmental FX’s Tracy Stackhouse and Sarah “Mouse” Scharfenaker for a discussion on how self-regulation makes things work for Fragile X.
Join us as we speak with Vicki Sudhalter, PhD, about Individualized Education Plans (IEP). Hosted by Robert Miller with Jayne Dixon Weber. The Individualized Education Plan (IEP) is a very influential document in the academic [...]
