Clouds, May 2010

Clouds, May 2010

Tuesday, January 20, 2015

why all the fuss

It's time for me to preach again. Because here in our little fragile x world (& beyond) we've had some very exciting happenings...

Through recent legislation as well as an (unrelated, albeit awesome) A-lister interview, we have a lot to smile about!

First, on December 19th, 2014 the most significant change in Federal law in decades-- to specifically benefit individuals with disabilities-- became a reality.

Second, on January 13th, 2015 Yahoo news released a very special interview which is already creating just the buzz the community was hoping for.

Part One of the awesomeness technically began nearly 8 years ago, when the National Down Syndrome Society initiated efforts to help people with special needs save for their future. Previously, these individuals would lose all SSI (Supplemental Security Income), Medicaid, & other supports if they accumulated as little as $2,000! It was an archaic law that was well overdue for change-- & furthermore, it also created a disincentive for individuals with special needs to work & be productive members of society.

So long story short in December of 2014, the bill to change all that overwhelmingly passed the House with a vote of 404-17. (Again, nearly eight years in the making!) Our community crossed their fingers & practically held their breath until the news broke that the ABLE Act went on to pass the Senate with a vote of 76-16. (ABLE stands for Achieving a Better Life Experience.) At that point, premature to President Obama officially signing the bill into law, we were already rejoicing in anticipation.

Then on December 19th, 2014, countless communities around the nation received the news they had been working towards & praying for. People living with disabilities now have the right to save for their future... like every other American citizen.

This bill had rare bipartisan support from its inception, & as the CEO of the NFXF said, this is also monumental as "one of the last & most widely-supported bills to pass this session of Congress".

Click here for a thorough explanation of the ABLE Act

And now, for Part Two of the awesomeness...

Through the incredible efforts of a CSN Co-Leader from NY, along with her husband/ NFXF Board Member (who also happens to work for Yahoo).... together they were able to get the ball rolling on setting up a Yahoo News interview with THE Katie Couric.

So one day last year, the idea became a reality at the FX Clinic at the Institute for Basic Research (IBR) on Staten Island. Finally Katie Couric & her team-- or should I say the fx community-- got their interview!

The very morning after the news feature was released, it drove so much traffic to the NFXF site that their servers became overloaded. As I said in my fb post (for those who saw), this level of coverage is not common in our community. And the most crucial take-away, in my opinion, is near the end of the clip after discussing the importance of the research & its critical relation to a whole host of other disorders, Katie asks,

"Why is there not more funding for fragile X?"

To which Dr. Randi Hagerman answers, simply,

"Because the people don't know about it."

Click here to see the interview!

It takes less than ten minutes to watch the video & read the article, but it is rich with information. Please pass it on & encourage others to do the same!


I would just like to add that when I shared these exciting pieces of news with friends & family, I reiterated something very important... 
People say this is the best community that you would never wish to be a part of. But take it from someone who was initially very reluctant to get involved, that once you are, you realize it s simply unparalleled.

A loved one who graciously shared the information with their family & friends as well, sent me a beautiful reply. Here is a portion of that message:

"Exciting developments indeed!  We are all capable of implementing change. Nothing is more rewarding than giving voice to a cause, particularly those involving children, then seeing the profound difference it makes in the lives of others...
Thank you for sharing these landmark events.  We, too, are amongst the greatest groups you never want to be a part of:  autism, Tourette’s Syndrome, bipolar disorder and profound ADHD.  Perhaps we will find a link with our family history of fragile x.
I have shared the information with family and friends.  It takes a village and I am proud to be part of yours!"

Advocacy Day is an annual two-day event organized & hosted by the National Fragile X Foundation. This March will be my 4th time participating.

Advocacy Day helps yield results like the passing of the ABLE Act.

Advocacy Day helps secure funding for the type of research discussed in the Katie Couric interview.

"We have to keep hope. Because without hope, what's the point." - Shari Silver

Please click here to learn more & register to join us for Advocacy Day 2015, on March 3rd & 4th. Anyone. Can. Join.


NJ Residents: Scholarships towards costs associated with Advocacy Day are available to you, courtesy of the New Jersey Fragile X Community Support Group. If you'd like to be considered for a scholarship, please email