Fragile X News

  • One of the most prevailing fears for a couple when their child has a disability is that their marriage will be affected; perhaps it will likely end. In fact, one of the things couples are told is 80% of them will be divorced because of the child. This is a statistic that has been debunked by Kennedy Krieger Institute. When couples tell me this statistic, I also tell them it is not my experience with couples who are parents of children with disabilities. However, it important to recognize... » FULL ARTICLE

    Posted on November 16, 2015 | Categories : FXS,FXTAS,Support and Resources | 3 Comments
  • Dear Families, You are invited to take part in a fragile X syndrome (FXS) study for racial and ethnic minority children and families by taking an online survey. The researcher, Georgianna Baker-Gay, is a Public Health doctoral student at Capella University. In partial fulfillment of the requirements for the Degree Doctor of Public Health, the researcher has chosen to examine the needs of FXS racial and ethnic minority children and families. The purpose of the study is to create a racial and ethnic minority Fragile X awareness and education program intended to improve identification and management of FXS... » FULL ARTICLE

    Posted on November 13, 2015 | Categories : Opportunities for families | 0 Comment
  • .sticky-element-fixed { padding-top: 45px; border-bottom: 2px solid #ccc;} A Message | Our Mission | Community Support Network | Let 'Em Know 5K | NFXF Advocacy Day | International Fragile X Conference | Membership | Financials | Xcepional Donors | ... » FULL ARTICLE

    Posted on November 6, 2015 | Categories : Annual Report | 0 Comment
  • Purpose of Study To better understand the emotional experiences and experiences with support systems of mothers who are carriers of fragile X syndrome and have had a child diagnosed in the first three years of life. Determine if there is a change in emotional intensity or a change in the types of support available and utilized by mothers before versus after a child is diagnosed with fragile X syndrome. Determine if there is a correlation between emotional intensity and types of support utilized before and after a child... » FULL ARTICLE

    Posted on October 28, 2015 | Categories : Opportunities for families | 0 Comment
  • For the last 11 years on , our Fragile X advocates have visited their Members of Congress (MOC) in Washington, DC, and produced incredible results – like NIH’s yearly expenditure of nearly $30 million for Fragile X research, the passage of the and more. After such success on a national level, the next step for continued growth was a local advocacy program. We introduce to you an exciting expansion of the NFXF’s advocacy activities: The STAR Initiative. Currently in its pilot stage, the... » FULL ARTICLE

    Posted on October 23, 2015 | Categories : Advocacy,STAR Initiative | 0 Comment
  • After eight long years urging passage by the US House and Senate, the ABLE Act was signed into law by President Obama in December of 2014. But ten months later, no one has been able to open an ABLE Account. Why is that, and when will we be able to do so? As they say: “These things take time.” The IRS Code and Final Regulations The act was ultimately enacted as an amendment to the Internal Revenue Service Code. The IRS Code is where the entitlement to open a college savings-529 plan... » FULL ARTICLE

    Posted on October 15, 2015 | Categories : Advocacy | 1 Comment
  • On September 25 to 27, 58 leaders visited St. Louis, Missouri, for the National Fragile X Foundation’s second biennial CSN Leadership Summit. The CSN is the national volunteer program of the NFXF, comprised of groups typically organized and run by parent volunteers. The CSN provides emotional and educational support to families and individuals living with Fragile X. CSN groups organize events that offer support and build awareness for Fragile X in their local communities. At the summit, CSN group leaders attended sessions to enhance their leadership skills and collaborate to better serve their local families... » FULL ARTICLE

    Posted on October 8, 2015 | Categories : Community Support Network | 0 Comment
  • The Awards began in 2014 as a way to recognize the incredible work and dedication of our CSN groups and leaders. There are four categories: Most Innovative Event Up & Comers of the Year Trailblazers of the Year CSN Leader of the Year The group awards are nominated by their regional leaders. The winners are voted on by all of the regional leaders. The CSN Leader of the Year is an extra special award as it is a peer-nominated award. All CSN leaders nominate and vote for... » FULL ARTICLE

    Posted on October 8, 2015 | Categories : Community Support Network | 1 Comment
  • This summer, the NFXF funded four summer student research fellowships at $2500 each through the Rosen/Weingarden Summer Fellowship Research Fund. Since its inception in 2000, the fund has awarded $225,000 to 90 students focused on advancing the knowledge and understanding of Fragile X. Today, we’re proud to present the four summaries of this year’s award recipients. Cellular and Biomolecular Characterization of Fragile X Patient Induced Pluripotent Stem Cell Derived Neurons Kanisha Desai Emory University Mentor: Dr. Gary Bassell The loss of the fragile X mental retardation protein (FMRP) in fragile X syndrome has been linked... » FULL ARTICLE

    Posted on September 30, 2015 | Categories : News Reports and Commentaries,Summer Student Fellowship Reports | 1 Comment
  • Learning to ride a public bus independently is a skill that many children with fragile X syndrome (FXS) will be able to learn. Many of them have ridden a school bus and some of the skills are transferrable. If your child has ridden a school bus, here are the aspects they may have encountered: The stop was near your house. The bus was usually on time except in poor weather, and in those cases, the school district would often call to let you know. Your child got to know the bus driver and many of the other students on the bus. Sometimes, someone from... » FULL ARTICLE

    Posted on September 29, 2015 | Categories : Adults,FXS | 2 Comments
  • Date: Thursday, October 8, 2015 Time: 8:00 PM Eastern / 7:00 PM Central 6:00 PM Mountain / 5:00 PM Pacific Description Dr. Craig Erickson makes his third appearance on our Let’s Talk! webinar series, for our ever-popular subject: Medication for individuals living with fragile X syndrome. Dr. Erickson is a noted Fragile X expert and the medical director of the Fragile X Clinic in Cincinnati, Ohio. He is a friend of the NFXF and will join us once again to share his knowledge on Fragile X and medication advice. The webinar will be a Q&A session during which you can... » FULL ARTICLE

    Posted on September 21, 2015 | Categories : Let's Talk Webinar | 0 Comment
  • Congratulations to Ben Moelis for winning an award for his game, which he developed to help Justin Silver – a family friend living with fragile X syndrome – structure his days. Ben Moelis was presented with the Diller Teen Tikkun Olam award that recognizes teenagers committed to social good. Ben and Justin are very close friends.... » FULL ARTICLE

    Posted on September 15, 2015 | Categories : Keeping You Informed | 2 Comments
  • Awareness Month was a Marathon Success! National Fragile X Awareness Month is a group effort. We prepare each July to unite and keep our communities informed about Fragile X, ensuring that one more doctor, one more teacher, one more neighbor knows about our cause and makes life easier for all families living with Fragile X. This year we held our 3rd Annual Let ‘Em Know virtual 5K during National Fragile X Awareness month and it was a huge success! Together you raised $100,000. We couldn’t have done it without you!... » FULL ARTICLE

    Posted on September 15, 2015 | Categories : Awareness Day | 0 Comment
  • A $1.75 million grant to continue research on fragile X syndrome was given to the Institute for Basic Research (IBR), Willowbrook, by the Centers for Disease Control. Fragile X syndrome is the most common known cause of inherited intellectual or developmental disabilities, and the most common known single-gene cause of autism. The grant will be used to expand the and enroll additional participants to collect new data. It will also be used to expand analyses on existing participants to more fully understand the medical, social, and economic needs... » FULL ARTICLE

    Posted on September 14, 2015 | Categories : Advocacy Day,FXCRC and Clinics,In the News,Keeping You Informed | 0 Comment
  • We’re excited to know that Mission to Lars is finally coming to the United States on September 25, 2015! The documentary starring Tom Spicer, a young man living with fragile X syndrome, was screened at our very own 13th International Fragile X Conference in Miami, Florida. Audiences were delighted to follow Tom’s journey, along with his sister Kate, from his home in the United Kingdom to meet Metallica’s Lars Ulrich in person. In the documentary, they fly to the US and drive across the country in hopes of meeting Tom’s idol, and even meeting our founder Dr. Randi Hagerman along... » FULL ARTICLE

    Posted on September 9, 2015 | Categories : Community Support Network,Keeping You Informed | 0 Comment
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