Let’s start with this question
If the Fragile X gene is so critically important and may be related to a whole host of diseases, why is there not more funding for Fragile X research?
We know that Fragile X causes a variety of conditions affecting a wide range of people, many times within the same family. It causes intellectual disability linked to autism, pregnancy issues and neurodegenerative problems. New research even links it to Parkinson’s, Alzheimer’s, schizophrenia, bipolar disorder, clinical depression and more.
Despite these stark consequences, funding has been slow to follow.
1 in every 47 babies are born with a form of the Fragile X mutation every day
We must act and take initiative if no one else will!
At the NFXF we have built our reputation on looking forward – forward to the future of research, our children, and better lives for everyone in our Fragile X community.
That future can only be achieved if we reach for it ourselves. We can no longer wait for the opportunity for better research and treatments for our children, brothers, sisters, mothers and fathers.
To Achieve Our Vision for a Better Future
We will drive research forward to improve scientific and medical advances towards effective treatments and a cure.
We will increase outreach and personal support to assist individuals and families living with Fragile X – every day throughout the lifespan.
With our clinics, we are working towards a cure
Our nearly 30 clinics across the country work together to share best practices, research and clinical experiences. Together they created the treatment consensus documents to help parents and professionals with a wide array of Fragile X issues. They also partner to create clinical and scientific breakthroughs.
Our FXTAS Task Force is on its way to translating therapies into studies, enhancing treatment for affected individuals, working with researchers and providing resources to local doctors – all of which will shorten the time to a cure.
In short, we will facilitate research for effective treatments today.
Our local chapters are here to make life better
We are continuing to improve the infrastructure of our Community Support Network (CSN) by providing valuable volunteer leadership training to nearly 50 chapters across the United States.
These chapters provide so much to their local community, through events like “moms’ night outs”, walks for awareness, picnics in the park, bowling parties and local educational events. Best of all, our community members have someone who is also on this journey – a friend who can lend a helping hand. Our groups are a true example of what we mean by strength and togetherness and we are investing more than ever to ensure their continued and improved success.
No one who is living with Fragile X should ever feel lost or alone. We want the best network of support for all families, wherever you are and whenever you need it.
Better Education Means People Know Enough About Fragile X to Do Something About It
Fragile X awareness is key to getting that initial interest in our cause. However, that’s only scratching the surface. People can make a meaningful impact when we continue educating them about Fragile X.
Our continuing goal to educate our Members of Congress at Capitol Hill every year won’t stop. It’s resulted in millions of federal dollars for Fragile X programs and research throughout the past decade. We’ve recently added STAR, a grassroots advocacy component in which volunteers advocate with their local government officials to maintain a year-round relationship.
Of course, we’ll continue to give you the best information on Fragile X, which you can share with your family, friends, physicians and teachers. Where else can you find webinars, videos and articles from the brightest experts in the field? We are the source for accurate, helpful news and education for Fragile X.
All we need is you!!!!
We can’t achieve our vision for the future without you. As our friend and supporter, you can help make real breakthroughs in Fragile X research. You can make sure that our volunteer leaders get the best training possible for everything our families need to rest easy knowing they have someone there for them. And you can ensure everyone living with Fragile X has the educational information and resources they need to get through every day.
That’s why we say Together, We’re Stronger.
PS: Our year-end appeal is underway. Please give today!