How You Can Stand Up to Fragile X

//How You Can Stand Up to Fragile X

How You Can Stand Up to Fragile X

When people ask me, What do you dotell them I help people living with a rare genetic disorder live their best lives – every day. After a pause, their response is often something along the lines of, Wow… that sounds really meaningful! nod my head in agreement, Yes, it is.

For nearly 15 years now, I’ve laughed and cried listening to stories from many of you about how the National Fragile X Foundation has helped you—through the dark times of the often-unexpected diagnosis, the challenges of finding knowledgeable doctors and therapists, the search for the best school experiences, the longing for friends and family who understand and care about you, the pain of assigning guardianship, the struggles in finding work and living situations for your adult children, the worry of who will care for them when you are not around, and the sense of loss that keeps coming back.

I’ve also shared in your triumphs and pride as I listened to stories of your family’s accomplishments beyond what anyone ever thought possible—the lemonade stands, the drum performances, the time they learned how to ride a bike, the homecoming dances, the graduations, the jobs, the involvement within the community, and the travel adventures.

The common theme to all these stories? The NFXF was there for each personevery step of the way. Now that is truly meaningful.

Having now served as the NFXF executive director for the past year, I’m even more convinced of the difference the NFXF makes for everyone living with Fragile X. This has been our mission for nearly 35 years and it informs all our work. Each initiative, program, and service we offer must make the difference in your ability to stand up to the challenges of Fragile X.

None of what we do would be possible without your financial support. We rely almost completely on generous donations from you and others and for that, I am always grateful. And, your donations go directly to helping families. In fact, nearly 80 cents of every dollar donated to the NFXF is spent on helping members of the Fragile X community stand up to Fragile X.

Each year, the Foundation responds to thousands of emails and hundreds of phone calls and social media comments. We answer questions, hear concerns, and oftentimes just listen to families and individuals affected by Fragile X. Many are able to find the answers they need on our website, which—because we continually add new and valuable content—remains the top-most visited Fragile X site. For example, if you couldn’t make it to the 16th International Fragile X Conference this past July, you can find much of the educational information available on our website, including live video recordings of the general and panel sessions. We also offer a monthly live webinar with knowledgeable professionals speaking on a variety of topics such as medication, current clinical trials, and behavior issues.

Your financial support also helps to provide the invaluable services of our Community Support Network. There is absolutely no way we can deliver our mission as effectively as we do without the dedicated volunteers who keep them running. But they need good training and lots of resources to do this work well. That’s why we invest in making sure they have the information and tools they need to help families in your community with social activities, fundraising, and educational events.

Another way the NFXF helps families stand up to Fragile X is through our expanding network of Fragile X clinics around the U.S. There was a time when the only option for Fragile X-specific care was to fly across the country to meet with Dr. Hagerman. Of course, there’s nothing wrong with that—she is amazingly awesome! But that is no longer necessary as we have increased the number of clinics to over 30 now, and counting. Our Fragile X Clinic and Research Consortium makes certain these clinics meet all standards for providing knowledgeable evaluation and treatment options that leverage the wealth of experience from dedicated Fragile X professionals worldwide. The Fragile X community is truly blessed to have so many scientific and medical professionals committed to helping you and all the families.

Now is the giving season, and I am asking you for your help to keep this work going and to expand our impact for Fragile X families. Serving more families in more ways is only possible with your support.

Research is an important part of our mission and we are committed to funding the NFXF Biobank. The combined clinical data and biological samples of hundreds of Fragile X patients (known as Research Ready Materials) will quickly help facilitate clinical research into many more effective treatments for Fragile X. Many researchers have said that this is the single most effective step we can take to accelerate Fragile X research. Our financial support funds the collection, analysis, storage, databasing, and distribution of these robust research materials.

Of course, Research Ready Materials won’t matter if we don’t have the next generation of Fragile X researchers involved, which is why we feel such a strong obligation to ensure their professional development. We are committed to attracting and supporting young research professionals in the field with our Summer Scholars and Junior Investigator programs. In addition, we are working with current treatment professionals to offer specialized training programs to ensure their valuable knowledge and expertise remains available long after they retire.

Research rolls into clinical trials, and we are working closely with several pharmaceutical companies and researchers to help ensure their clinical trials are well designed. This helps to ensure a positive experience for patients and their families. We also help market the clinical trial opportunities to families so that everyone who can and wants to participate knows how and where to go to enroll. After all, a trial is only possible with participants.

We remain invested in our public policy and advocacy work too. Getting the attention of the federal government for Fragile X is a tall order, but to date we’ve been very successful, thanks in large part to all those who show up at NFXF Advocacy Day in Washington, D.C., every year, to make sure federal funding for Fragile X research continues to be a priority.

When I think about what the NFXF is good at, it is this… we make things happen by connecting people and ideas. In short, we unite the Fragile X community to move forward, to find better treatments, to help research happen faster, to keep the research funding coming, to make services more accessible, to help more people know about Fragile X, and, at the end of the day, to make sure that everyone can stand up to Fragile X.

You are part of our work. We can’t do it without you, and we need your support now. Just this year, another 3,000 families connected with us. They are families, like you, who are on the Fragile X journey and need community, education, awareness, advocacy, and research. I hope you are as committed as I am to make sure that we keep standing up to Fragile X by giving as generously as you can this year, for all Fragile X families.

You can give securely online right now at https://give.fragilex.org.

Thank you for believing in the value of the NFXF. I am truly touched by your support.

With my sincere gratitude,

Linda

Linda SorensenExecutive Director
Linda has been a member of the NFXF team since 2004. She has over 25 years of experience in non-profit programs, operations management, board and volunteer development. She earned a BA degree in Psychology and an MS degree in Adult Education and Organizational Development. She loves the company of her family and friends and enjoys golf, along with entertaining, traveling, and reading great books.
By | 2018-12-10T21:00:41+00:00 Dec 10, 2018|Foundation|Comments Off on How You Can Stand Up to Fragile X