Posted at August 8, 2016 | By: | Categories: Annual Report
Together, We're

2015 NFXF Impact Report

  • CEO and Board President Message
  • Our Mission

Thank you for making 2015 such a success! Your dedication to the National Fragile X Foundation helped us keep our mission growing stronger and increase our impact in research and support.

Now that scientists have discovered the effects of the Fragile X protein on well-known diseases such as Parkinson’s and Alzheimer’s, the work of the NFXF becomes increasingly critical. We are more committed than ever to improving the outcomes of clinical trials through our FX Clinical and Research Consortium.

Even more important however, continues to be the families in the Fragile X community. They depend on the NFXF and our indispensable network of Community Support groups seeking the support, resources and information to meet the challenges of living with Fragile X every day. We could not possibly do all this without them and are continuing our investment in strengthening this tremendous asset.

So thank you again for being part of our many accomplishments!


Jennifer Silverton
Board President

Tony Ferlenda
Chief Executive Officer

The National Fragile X Foundation unites the Fragile X community to:

  • Enrich lives through educational and emotional support.
  • Promote public and professional awareness.
  • Advance research toward improved treatments and a cure for Fragile X.


The Community Support Network: Giving your Children a Voice

As a national organization, our success depends on the volunteers of the to help families on a local level. Their hard work ensures that a tangible helping hand is there for everyone in the US living with Fragile X. Email our leaders or call them up, and they’ll be there for you!

We’re particularly proud of the Sibling and Self-Advocates CSN – our first-ever chapter designed for your children –who made a big splash in 2015. Led by Dillon Kelly and Kelley Devine, they held several fundraisers and won Up and Comers of the Year at the CSN Summit Awards. They’re only just getting started!



States with CSN Groups


CSN Groups


CSN Leaders


Parent Contacts



Funds Raised by the CSN


Funds for Direct Support


Funds for Additional Support

Conference sponsorships/scholarships, Advocacy Day scholarships, Action Grant sponsorships, etc.


Business Meetings

Social Events

Local Advocacy/Awareness Events

Fundraising Events

Educational Events

National Fragile X Awareness Month: Let 'Em Know on Yahoo!

For National Fragile X Awareness Month in July, we encouraged our community members to Let ‘Em Know! For this nationwide event, participants donned their special race shirts and bibs, and hit the town – walking or running in the name of Fragile X. Let ‘Em Knowers were encouraged to spread the word and get friends together for local walks, sharing photos with their friends on Facebook and Twitter, and raising awareness.

Half way through Awareness Month 2015 the Fragile X community was excited when Katie Couric put the spotlight Fragile X on Yahoo News! The news piece featured interviews with NFXF co-founder Dr. Randi Hagerman, NFXF board member Brian Silver and his wife Shari, who co-leads the Fragile X Resource Group of Greater New York City.

Fragile X Advocacy Works: The Fruits of our Labors

2015 NFXF Advocacy Day was our largest to date with nearly 200 advocates speaking to their Members of Congress on Capitol Hill! It was also one of our largest turnouts of self-advocates. Our continuous efforts over the past four years resulted in the passage of the ABLE Act which allows families to save pre-tax dollars on the care for children with disabilities (similar to a college savings account).

After 2015 Advocacy Day, we launched a nationwide state advocacy initiative named STAR (State Teams for Advocacy Results). The new public policy program appoints state leaders to extend our advocacy efforts year-round, planning visits to the local offices of their Members of Congress, in order to continue the relationships built in Washington, DC and further develop our legislative agenda at home.

The FXTAS Task Force

Discovered nearly 15 years ago, there is still much to learn about FXTAS. Thanks to a generous donor, we were finally able to convene a number of experts in the field for the first of many FXTAS Task Force meetings to examine the current status of the condition and develop plans to effectively meet evaluation and treatment needs of people affected with FXTAS.

Together, We're Stronger!

When you join the NFXF, you add your voice to our efforts to raise Fragile X awareness across America and expand the influence of the Fragile X community. You provide stronger visibility to decision makers in the federal government who allocate funding for research. We hope you’ll join us today. Membership with the National Fragile X Foundation includes these exclusive benefits:

Let’s Talk!: Professionals from the Comforts of Home

We hosted six Let’s Talk! webinars featuring professionals who addressed the daily challenges of living with Fragile X. Participants asked questions and received answers in real time on topics like adult transitions, genetics, clinical trials, premutation carrier issues, behavior and medication.

Xtra Special: Fragile X in your Hands

Our publishing efforts have continued to shine with the second edition of Xtra-Special – an anthology of educational articles to serve as a timeless resource to families. The magazine featured topics on the basics of Fragile X behavior, the progress of self-advocates, the latest information on FXTAS, the value of visiting Fragile X clinics, and inspirational stories from parents of children living with Fragile X.

Although the second edition is now out of print, all articles printed in Xtra-Special can also be found on our website. The newest issue of Xtra-Special is available now by becoming a member of the NFXF.

To support the NFXF, visit


The following financial information is distilled from a full audit conducted by Regalia & Associates, Certified Public Accountants, in accordance with generally accepted accounting principles. For the firm’s full report, see


  • Grants & Contributions
  • Special Events
  • Program
  • Realized Gains/Losses


  • Programs & Activities
  • Fundraising
  • Management & General


You can help us accomplish even more with your support! Donate today!

Xceptional Donors

Xceptional Donors – Gifts of $1200+

While every one of our donors provide invaluable support, we’d like to recognize these donors for their Xceptional commitment to our success.

Benjamin Abrams
Miriam and David Ackerman
Ariela and Mendel Balk
Joyce Barber
Melissa and Al Blount
Judith Bowe
Jay Canel
Lynda And Scott Canel
Barry Cherny
Joseph A. Christoff and Catherine Frey
Jeffrey and Arlene Cohen
Cheryl and Carey Cooper
Darlene Donovan
Mara and Jonathan Dorff
Kenneth Farber
Terumi and John Fletcher
Philip Garoon
Jammie and Tim Geels
Elina and Tony Gelfand
Jessica and Jim Gerace
Caryn and Mark Gershenson
Gordon Leggett
Kathleen and John Graham
Kimberly and Mark Grimmel
Randi and Paul Hagerman
Bonzetta and Darryl Hairston
John Harrigan and Stephanie Jacob
Gail Harris-Schmidt & Stephen R. Schmidt
Emily and Greg Mack

Gail and Lyons Heyman
Anita and Richard Inz
Margaret and Martin Israel
Noah Jacobs
Lisa and Michael Kelley
Sondra Kraff
Steve and Shirley Kaufman
Tom and Peggy Lang, MD
Kathy Lett
Tina and Mike Makris
John and Lisa McGlinn
Todd and Kristin Mizenko
Marilyn and Michael Morgan
Jeff Mortimer
Tracey and John Petrides
Jeffery and Marcy Pipkorn
Brad and Jennifer Prather
Courtney and Scott Purviance
Shari and Brian Silver
Kimball and Jennifer Silverton
Diane and Giff Smith
Anne and Jay Souder
Russ and Linda Strand
Denise and Howard Stredler
Carolyn and John Tomberlin
Rosa and Angel Vega
Carla and Brad Verworn
Vic LaFave
Heidi and Jeff Wilke

Thank You for Making our Work Possible!

CSN Group Supports Gifts of $5000+

  • Central Florida Fragile X
  • Central Illinois Fragile X
  • Families for Fragile X
  • Fragile X Association of Michigan
  • Fragile X Families of Northern Virginia
  • Fragile X Resource Group of Missouri
  • Greater Chicago Fragile X
  • New Jersey Fragile X Community Support Network

Fundraising Events Partners

  • Pie in the Face – St Louis, MO
    NFXF FREM – (#AnythingForFragileX)
  • Wrinkle Free Event – MI
    Jennifer Silverton
  • Dine and Donate – NC
    Lisa Ward
  • Lizzie’s Annual Open House – St. Charles, IL
    Nancy Reilly
  • Dine and Donate – NC
    Geri Rushing
  • Clipping 4 Causes – St Cloud, WI
    Brittni Buechel
  • Cape Coral Touch-a-Truck – Cape Coral, FL
    Fran Marsino
  • Spin a Kick for a Cure – West Bloomfield, MI
    Dana Cohen
  • Jeans Day Fundraiser – Chicago, IL
    Henderson Global Investors