Study Finds People with Fragile X, Carriers Likely to Have Additional Conditions

NFXF’s Fragile X Clinical & Research Consortium Receives $1.6 Million Award from CDC

UC Davis M.I.N.D. Institute and Rush University Medical Center to begin widespread newborn screening for FXS

NFXF’s Fragile X Clinical & Research Consortium cited in report to President (PDF)

http://www.newsobserver.com/opinion/columns/story/1180033.html

The National Fragile X Foundation, along with numerous national organizations representing persons with intellectual disabilities (formerly referred to as mental retardation) has joined a protest, and a call for a boycott, of the movie Tropic Thunder. The NFXF has joined this protest due to the film’s insensitive and liberal use of the word “retard” as a form of humor. Though the NFXF understands that the filmmakers intentions were not meant to directly hurt individuals with fragile X syndrome and other intellectual disabilities, we feel that the result is a perpetuation of a term that causes pain and limits the opportunities for such individuals to be full, contributing members of society.

The National Fragile X Foundation works to expand the opportunities for all adults with intellectual disabilities including through its founding and ongoing facilitation of the Washington, DC-based Collaboration to Promote Self-Determination. Please join the NFXF and its collaboration partners by getting involved.

To learn more about this national effort to bring greater awareness of the contributions that our citizens with intellectual disabilities bring to our nation, and to efforts to accurately and respectfully represent those citizens in the media, please visit the following links:
  Special Olympics
  The Arc
  TASH

PRESS RELEASE: National Fragile X Awareness Day and High Hopes for New Treatments

ST. LOUIS — Breakthrough research findings describing potentially significant new treatments for Fragile X Syndrome (FXS) will be presented to nearly 1,000 family members and professionals at the 11th International Fragile X Conference in St. Louis July 23-27. More than 200 speakers will describe the latest treatments for symptoms related to the mutation of the Fragile X gene and powerful new medications being researched. Read more...

The National Fragile X Foundation is pleased to welcome the newest and 15th member of the Fragile X Clinical & Research Consortium. Effective today, Dr. Gwen Glew will be directing the Fragile X Clinic at Children's Hospital and Regional Medical Center in Seattle, WA. Dr. Glew is a developmental and behavioral pediatrician who has attended the past two FXCRC meetings and will be present at the 11th International Fragile X Conference. In addition to Dr. Glew, Dr. Lauren Plawner, a pediatric neurologist at the hospital, who is also trained in adult neurology, will see adults with Fragile X.

For a complete list of Fragile X clinics visit http://www.fragilex.org/html/clinics.htm

Time Magazine July Issue Article titled "The Fragile X Factor"

The last time our site was renovated (year 2000) 14-inch monitors running at 640 by 460 resolution were the norm. Our site is now being rebuilt to the current standard of a 19-inch monitor running at 1024 by 768 resolution. In the meantime you will find a mix of both sizes. Thank you for your patience and rest assured that we will continue to add new content on a regular basis during the renovation.

Stephen Warren, Noted Fragile X Researcher and Advisor to NFXF Appointed as Autism Speaks Advisor

NFXF Editor’s Note: The following article refers to legislation which the Collaboration to Promote Self-Determination has made a central focus of their current efforts. The National Fragile X Foundation continues to help provide leadership and coordination of this Washington, DC-based collaborative.

Equity for the Disabled Tax-free savings accounts shouldn't be reserved for children with college in their future.

Friday, June 13, 2008

PARENTS WHO want help saving for their children's college education enjoy generous tax breaks. Parents of disabled children, including children who have little or no hope of going to college, receive no such benefit to help defray the enormous extra costs their children may incur.

Several pieces of legislation have been introduced in Congress to create tax-free savings accounts for people with disabilities. In the Senate, one version is sponsored by Sen. Christopher J. Dodd (D-Conn.) and another by Sens. Robert P. Casey (D-Pa.) and Orrin G. Hatch (R-Utah). A version similar to the Casey-Hatch bill was introduced in the House last month by Rep. Ander Crenshaw (R-Fla.).

Although they differ in some details, these measures would allow parents, other family members or those with disabilities themselves to put money into special accounts; the savings would grow tax free and would not be taxed when withdrawn to pay for qualified expenses. Such accounts are a worthy idea that would address the current inequity in the tax code. As important, they would enable families of people with disabilities to provide a financial cushion without endangering recipients' eligibility for Medicaid and Supplemental Security Income benefits.

These accounts also pose complicated questions, especially about their interaction with benefits eligibility. Currently, those programs impose strict asset limits. The account proposals provide that money deposited in the accounts not count against eligibility. The trick is to permit parents to provide some extra help for children with disabilities without encouraging wealthy people who could easily pay for health care and other needs to sock away large sums in these accounts while moving family members onto government benefits. What limits should be put on the size of the accounts or on total contributions? Should eligible expenses include housing? Should money left over in an account after a person's death be given to the government to reimburse its expenditures? These are critical but resolvable details to be worked out as this worthy idea moves forward.

To Read more...www.geneticalliance.org

To Read more...FSAID brief (PDF)

Kathy Elder, a Santa Cruz [California] film producer and writer, has watched her 30-year-old twin cousins Ryan and Conor Kahl struggle through life with Fragile X and the heartache their parents have suffered as they've worked to come to grips with the disorder, which usually causes mental retardation and autism.

Elder has poured her compassion and experience with the disorder into a documentary called "Living with Fragile X," an hour-long film that reveals what it's like to live with the syndrome and how doctors hope for a breakthrough in gene therapy and gene repair.
For more information visit ThinkMedia or phone 831-459-7338.

Dr. Randi Hagerman, founder of the National Fragile X Foundation and a current board member as well as a member of its Scientific and Clinical Advisory Committee, is quoted in the December 19 issue of Time.com: "Hagerman, one of the nation's leading researchers on Fragile X, hopes that the current explosion of interest in the disorder will lead more people with autism and their relatives to be tested for the Fragile X defect. Just being a carrier of the disorder can have health implications, including an elevated risk of premature menopause for women and tremors and cognitive decline in older men. Theoretically, a drug that treats Fragile X could lower risks for carriers as well. Says Hagerman: "It's a very exciting time." Complete article: A New Approach to Correcting Autism

RESEARCH TRIANGLE PARK, N.C. -- Don Bailey, Ph.D., Distinguished Fellow at RTI International, has been elected president of the Board of Directors for the National Fragile X Foundation. Bailey will serve a three-year term beginning in January, 2008. Read More...

Florida-based Conquer Fragile X Foundation has joined California-based National Fragile X Foundation to create an even more comprehensive research, support, education, awareness and legislative advocacy organization. To learn more please read our 11/5/07 press release.

UC Davis California is Recipient - NFXF provides seed money
- Press Release from the National Fragile X Foundation
- UC Davis Health System News & Information
- UC Davis NeuroTherapeutics Research Institute (NTRI)

In February 2007, representatives from thirteen US and one Canadian Fragile X Clinic met in St. Louis, Missouri for the first formal meeting of the Fragile X Clinics Consortium. The meeting was organized by the National Fragile X Foundation which is providing the administrative structure along with facilitation, coordination and seed money.

The three primary themes of the consortium are:

• To develop a shared knowledge base of organizational, administrative and clinic funding structures that will assist current and future clinics with becoming more effective and efficient
• To develop a shared knowledge base of effective interventions, particularly for difficult cases
• To establish a structure for facilitating collaborative research efforts, including drug trials

The NFXF believes that:

• An effective, efficient and geographically dispersed system of clinics will provide better, more comprehensive and more easily accessible services for families.
• A consortium communication system will create a greater likelihood that doctors and therapists will provide services that are more likely to be evidence-based or, when research evidence is lacking, services that draw on the combined experience, insight and wisdom from practitioners with the greatest amount of experience treating those affected by Fragile X.
• A well-organized consortium will speed up the process by which promising new interventions, including new medications, can be evaluated, approved and disseminated.

As the scientific and medical understanding of Fragile X grows, leading to new insights and interventions including pharmacological interventions, the National Fragile X Foundation is taking the lead in the identification of Fragile X patients and linking those patients to the appropriate professionals and interventions.

Comprehensive information about the clinics, including location, contact information and services provided, will be available on the NFXF website by the end of March 2007. The consortium meets again in Denver on July 20, 2007 in conjunction with an NFXF international webcast featuring the the clinic's medical directors and counselors discussing treatment of difficult cases. (More to be announced.)

February 13, 2007, University of Wisconsin-Madison

On December 18, MSNBC began a series called "What's In Your Genes?" by focusing on fragile X syndrome. The piece featured Dr. Randi Hagerman at the UC Davis M.I.N.D. Institute and included an interview with parent Sydney Rainin as well as scenes of both a younger and an older child. The clip can be seen here!.

The National Fragile X Foundation was pleased to play a role in seeing that this piece aired. December 2006

After numerous articles about autism in both Time and Newsweek, that mentioned the possible genetic basis of much of autism without any mention of Fragile X (other than an April, 2005 Letter to the Editor published in Newsweek noting their failure), the November 27, 2006 issue of Newsweek does briefly mention Fragile X in the page 52, "A Terrible Mystery" article. We quote, "...mutations on almost every chromosome have been suggested as possible culprits, including some implicated in rare disorders related to autism , such as Rett's Syndrome and Fragile X."

A 75 second health report on fragile X syndrome aired throughout the day on CNN Headline News, Friday, August 11 and, periodically, on CNN affiliates beginning August 14.

The piece was filmed at the recent 10th International Fragile X Conference in Atlanta and features Steve McKee, president of the National Fragile X Foundation, along with his wife Wendy and his son Nick. In addition, it includes part of an interview with Dr. Steve Warren of Emory University, honorary 10th International Fragile X Conference chairman and member of the National Fragile X Foundation's Scientific and Clinical Advisory Committee.
CLICK HERE to view the video

Award Given to Co-chair of the National Fragile X Foundation's Scientific and Clinical Advisory Committee

The National Fragile X Foundation has launched a much-enhanced "Message Board/Discussion Topics" online communication system for parents and professionals. New features include the ability to receive an email notification when a new message is posted in the forum or forums users select. The NFXF message board is ad-free and there is no charge to participate. First-time users will need to create a user name and password. Once that's done users can join in discussions on a variety of Fragile X related topics including, Behavior, Social Skills, Occupational, Speech and Language Therapy, Medication, Education, Toileting, Adult Issues, Research, Premature Ovarian Failure, Fragile X-associated Tremor/Ataxia Syndrome and Public Policy/Legislative Advocacy.

Take a look at the message board by Clicking Here

The purpose of the CDC grant is to develop and disseminate cascade testing and genetic counseling protocols for conditions related to changes in the FMR–1 gene, including fragile X syndrome, fragile X-associated tremor/ataxia syndrome (FXTAS), and fragile X-related premature ovarian failure (POI).

This grant has been awarded to the Fragile X Research and Treatment Center at the M.I.N.D. Institute at the University of California at Davis (Randi Hagerman MD, Medical Director) in partnership with the National Fragile X Foundation (NFXF). Also collaborating are other national and Canadian parent established organizations associated with fragile X including Conquer Fragile X Foundation (CFXF) and the Fragile X Research Foundation of Canada (FXRFC). Also involved will be families of children affected by fragile X syndrome (FXS) and individuals who have FXTAS and POI so that their input and feedback can be incorporated into the development of the guidelines for genetic counseling, cascade testing and screening endeavors. Other professionals involved will include primary care providers, neurologists, psychiatrists, obstetricians and gynecologists, geneticists, pediatricians, genetic counselors, psychologists, nurses and researchers including molecular biologists and epidemiologists who will all come together in focused advisory groups to expand guidelines for genetic counseling, cascade testing and screening. Broad dissemination will get this information out to the professional community where it can be utilized particularly by primary health care providers in addition to specialists, many of whom are just becoming aware of FXS, FXTAS or POI.

High school in a solid drive against Fragile X syndrome (PDF)

Click here to view PUBLIC SERVICE ANNOUNCEMENTS (PSA videos)
or Click here to view the 4 Minute INFORMATIONAL VIDEO.

The National Fragile X Foundation is pleased to report that on April 6, 2004, a fragile X informational postcard was mailed to almost every practicing pediatrician in the United States (44,000). Thanks to our many financial supporters, our friends at the American Academy of Pediatrics, and the generosity of Rick Powell and the Production Management Group of Maryland, this long-planned project of the NFXF's Board of Directors has finally come true!

So the next time you visit your child's pediatrician, ask him or her if they have received it, and if they have any questions about the information on the card. (Since it was sent nonprofit 3rd class it may take up to a month for it to reach all recipients.)

After much discussion with pediatricians around the country, a simple postcard format was selected to increase the likelihood of the card being noticed and read.

You can view the card on the AAP website by clicking the second bullet, "post card," at http://www.medicalhomeinfo.org/screening/FragileX.html

Dear Families and Professionals in the Worldwide Fragile X Community,

The National Fragile X Foundation proudly announces its new calendar for "Fragile X Events Around the World".

Thanks to the support of our members and donors, the NFXF has created and will maintain this event calendar for the benefit of the worldwide fragile X community. We are encouraging scientists and researchers, medical professionals, parent support groups (national and international), educators and therapists, governmental entities, and other institutions to utilize this calendar.

The categories are:

Awareness Events
Conferences - International
Conferences - USA
Scientific Meetings
NFXF Special Events

We encourage you to submit events that have regional, national or international appeal.

If you would like to have your event added, please email the details to the NFXF with the subject heading, "For Master Calendar".

Please be sure to include contact information including names, addresses, telephone numbers, email addresses, and related website addresses.

If it is determined that the event is appropriate for listing it will be added as soon as possible, however the NFXF cannot guarantee that your event will be added. (The NFXF regrets that it cannot post events that do not fall primarily within one of the above categories, or events that are only local in nature.)

To view the current calendar, please click here or visit our home page and click on "Conferences & Events" then "Calendar".

Sincerely,

Robby Miller
Executive Director
National Fragile X Foundation