Advocacy Action Alert

The National Fragile X Foundation needs our help once again to get the proper funding that our fragile x families need.  It will only take 5 minutes of your time and it is for an excellent cause.  Please email your representative.

To:                  All NFXF Advocates   From:              National Fragile X Foundation                              Public Policy Committee          Date:               March 8, 2008   RE:                 Action Needed: Please Contact Your                         Representative Today                                                  (Deadline is March 12!)   On February 26th and 27th, nearly 70 advocates from 25 states traveled to Washington for the 5th annual NFXF Advocacy Day to raise awareness and bring attention to the need for increased funding and resources for Fragile X.  Please help us to build on these efforts by taking just a few moments to e-mail your Representatives TODAY in support of this year’s requests.   As in recent years, federal funds are again tight and Congress is increasingly strained to deliver additional funding to Fragile X research.  As a result, it is even more important than ever that Members of Congress hear from you, as constituents and as advocates.  Nothing motivates a Member of Congress more than hearing directly from YOU!    We are asking Congress to support two important efforts this year. First, we are asking Members to include provisions specific to Fragile X funding in the Fiscal Year 2009 Labor, Health and Human Services appropriations legislation, which funds the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC) and Health Resources and Services Administration (HRSA).  This year, our main requests are that Congress support: §         Appropriations Report Language requesting that the National Institutes of Health:           enhance its efforts across its Institutes to translate basic science findings into viable treatments for Fragile X, and encourage clinical drug trials for this orphan indication;              maximize Fragile X resources by ensuring that appropriate resources and direction is provided to implement the objectives outlined in the Fragile X Research Blueprint; and           strengthen and broaden research on Fragile X and its associated disorders, Fragile X-associated tremor ataxia syndrome (FXTAS) and Fragile X-associated primary ovarian insufficiency (FXPOI). §         $1 million in new funding for the National Fragile X Public Health Initiative and other Centers for Disease Control and Prevention (CDC) activities such as collaboration with the Fragile X Clinical Research Consortium to pursue initiatives that would have the greatest impact on individuals living with Fragile X across the generations. §         $5 million in new funding for the SPRANS initiative within the Health Research and Services Administration to strengthen states’ newborn screening programs and improve states’ ability to develop, evaluate and acquire innovative testing technologies and establish screening, counseling, testing and service programs for newborns and children at risk for heritable disorders, with emphasis on Fragile X. Second, we are asking Members of Congress to cosponsor significant legislation that will give families of people with disabilities the ability to save for their child’s future just like every other American family, and help people with disabilities live full, productive lives in their communities. The Financial Security Accounts for Individuals with Disabilities Act (FSAID) would give families of people with physical, cognitive, or developmental disabilities access to saving that everyone else enjoys. Individuals with disabilities or their families could create a disability savings account that would accrue interest tax-free. The account could fund a variety of essential expenses for the person with disabilities, including medical care, education and employment training, and assistive technology. Adults with disabilities could also spend the funds on housing and transportation.   Over the next few weeks we will ask that you weigh in with your Representatives and Senators on both of these requests. TODAY, we are asking that you follow up with your Representatives in the HOUSE on the federal funding requests. In the coming weeks you will receive additional alerts on the SENATE funding requests and on the FSAID legislation.   How It Works   To make it easier for other Members of Congress to support the requests to the Appropriations Subcommittee, Congressmen William Delahunt and George Radanovich are once again circulating a letter to the Labor, Health and Human Services, and Education Appropriations Subcommittee with the requests for Fragile X funding provisions, that other Members of Congress can sign onto.  Members ONLY have until March 12thto join this letter. So We are asking you to e-mail your Representatives to encourage them to add their name (SIGN ON) to these letters before it is sent to the House Subcommittee. The more support we solidify, the more powerful we will be in moving the Appropriations Subcommittee to support our requests with respect to the NIH, CDC, and HRSA.   Please take a few minutes – today if you can- to personalize our draft e-mail to your Representatives asking him or her to sign onto the Delahunt/Radanovich  letter to the House Appropriations Subcommittee in support of increased funding for Fragile X.  (If your Representative is an Appropriator – which will be identified by our system - your letter will ask for their support of these requests when the matter comes before their committee).  Just click on the following link and follow the simple instructions to generate all of these emails.  The process should take no more than a couple of minutes and will make a big difference.    CLICK HERE TO PREPARE AND SEND YOUR LETTERS   *Please send emails (regular mail will take too long) If the above link does not work copy and paste the following into your browser window:   http://www.congressweb.com/cweb4/index.cfm?orgcode=nfxf&hotissue=17  If you have any questions or need assistance in completing these letters, please do not hesitate to contact:  Leah Howard                                       lmhoward@bakerd.com                       202-589-2806   THANK YOU for taking the time to help.  The National Fragile X Foundation has the attention of Congress as it never has before – and it’s because of you.      All our Best,   Your National Fragile X Foundation Washington Team   Others can help too-Forward this email and ask friends and family who have an interest in FX to send letters as well…The more our voices are heard the better   CLICK HERE TO WRITE TO YOUR MEMBERS OF CONGRESS   Advocates Speak about NFXF Advocacy Day:   …the experience was simply wonderful.  We were tired, our feet hurt, but our minds and hearts feel great!  This was really part of our healing and acceptance of Fragile X as part of our everyday lives.  I would strongly recommend Advocacy Day to anyone and everyone.  After the first meeting, the jitters were gone and it was smooth sailing.  _____________________   We had a great day yesterday.  Out of 11 meetings, with the exception of one or two we had a great response. It was an incredible experience and our family team is looking forward to our next Advocacy Day! _______________________ The opportunity to advocate for one’s child/family member in this way is empowering, without doubt.   I can’t imagine a better motivating force than a family that has come to DC to talk about their child’s needs.  Families get to help solve the problem and members are reminded that those that elected them have specific needs and requests.  We had a very positive response. _______________________ I thought it was outstanding.  The preparatory afternoon was excellent, Thanks to everyone for your hard work in organizing it. ______________________ I do feel the experience of participating in Advocacy Day was a very positive one.  Members of congress and their staff want to know what daily life is like with Fragile X.  Personal stories are very powerful way of touching someone to action, hopefully, it will be to support funding for Fragile X and other initiatives. Awareness of Fragile X is key!     _______________________  I was extremely glad that you provided the structure for me to lobby in Washington for help with Fragile X, which is the story of my life. Also glad to meet the people at the National fragile X Foundation who have been working so hard and long on my behalf, as well as some of the other advocates. I felt most empowered not so much by giving my part of our presentations, but by learning the positive results of the four previous Advocacy Days, when before there was little or nothing. It was most gratifying to get an opportunity to add to your impressive past record. Quick Links What is Fragile X? Fragile X Clinics   “The National Fragile X Foundation has been a powerful voice for a broad approach to Fragile X research, which is so critical if we are to develop integrated treatments for children with fragile X syndrome-and their grandfathers.” Paul Hagerman M.D., Ph.D.   Quick Links Membership DONATE ONLINE   On March 3, the US Congress officially renamed the National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) to honor Eunice Kennedy Shriver, founder of Special Olympics. Learn More