Moving Forward: Meet the NFXF's Interim Executive Director Jeffrey Cohen

Meet Jeffrey Cohen, new interim executive director of the National Fragile X Foundation. Cohen, who succeeds Robby Miller, has a long association with the Foundation. He joined the NFXF Board of Directors in 1996 and served until 2010. During that time, he was board president from 1997-2003 and was chair of the Public Policy Committee from 2003-10. Since 2011, he has served as the NFXF Director of Government Affairs and Advocacy. Cohen earned degrees in business administration and law from Wayne State University. He lives with his wife, Arlene; son, Josh; and daughter, Alli; in West Bloomfield, Michigan. Both of their children are affected by Fragile X syndrome.

In his new role, Cohen responds to questions about the Foundation.

What is something most people do not know about you?

Before attending law school, I was a traveling salesman selling cookware and cutlery. That was a great way to learn both people and persuasion skills. I draw on those lessons learned to this day.

What are the qualities you admire most? Least?

I admire the ability to see both the forest and the trees. Individual goals and objectives must be accomplished to achieve success, but to be successful one cannot lose sight of the big picture. I admire listening and those who practice the art. No single person ever has all of the answers. Truly listening brings not only new perspectives and ideas to the fore, but it also creates team members who are invested and take ownership of shared visions and goals. I admire those who invest themselves in whatever they do and take ownership of a task and responsibility for its success. The quality I admire the least is rote adherence to precedent, structure and rules. I cannot tolerate putting form over substance. Problem solving and success require creativity. The way something was done yesterday may not be the best way to do it tomorrow. The status quo is often the easy way out that requires the least effort and creativity. Any organization that wants to grow must be willing to continually ask whether the way we’re doing something today is the best way. If not, we must break from precedent, reform structures and rewrite the rules.

Can you describe your leadership style?

I listen to myself and others. I learn from experts and team members. I question what I learn and test it against my core values and objectives. I decide upon a course and encourage others to invest and take ownership of a shared vision.

What immediate changes can NFXF members expect under your leadership?

Expect a new focus on development. With new treatments on the near term horizon, with greater awareness swelling the ranks of those diagnosed with a FXD, with newly documented connections between the Fragile X protein and autism, Down Syndrome and other critical pathways in the brain and throughout the human body, and with diminished government funding of research, the demand for information, services, support and research is exploding. We must grow as an organization to meet these new challenges.

What specifically do you expect to accomplish over the next three months? Six months?

I know most LINKS leaders, families, staff, board and SCAC members, and leaders in research, clinical and government circles well. Although I may not need a formal introduction to most, it will be important for me to “reach out and touch” as many as I can, as soon as I can. Look for me at your front door, on your caller ID or in your Inbox. I also set up a direct hotline so you can call me. In six months, new plans and directions should be evident and implementation will be under way. In one year, measurable changes should be evident.

Do you expect to make any changes among Foundation staff? The Board of Directors?

We’ve got a great staff and board. Having just met with each group as part of a board retreat last summer and a staff retreat last month, I am confident all share my vision and have the dedication and energy to take the Foundation to the next level. Change is inevitable, but this is a great group.

What is your perspective on LINKS Support Groups?

They’re at the core of everything we do. This program has come together wonderfully in recent years. I look forward to great things from them. As a parent of two young adults living with FX, soon after the diagnosis, Arlene and I set about the business of helping our family AND helping others. A healthy mix of self-focused action and altruism to help others walking the same path was just the right mix to put our lives back in order. That’s what LINKS leaders and members do everyday. They take care of their own and they reach back to help others on the journey. We live the same lives and speak the same language. I am honored to work with them to take the foundation to the next level.

What areas do you think the Foundation excels? Needs help?

I’m proud of the job we do in just about every area. There’s more to do than we have the time or the people to do it. That’s why we need a new focus on fundraising. Doing more, and doing it well, takes more. It’s really pretty simple. Now we all need to get to work.

Will there be any immediate changes on NFXF communications? Fundraising?

“Immediate” is going to come around pretty quickly. One thing for sure is you’ll be hearing more from me soon — across the entire spectrum of communications, including fundraising. Count on me to do everything in my power to make this a better NFXF and to make the world a better place for everyone who’s impacted by a FXD. We’re all in this together, so I’ll be counting on you, too.

Anything else you would like us to know about you?

You all probably know this, but we’re walking in each other’s shoes and living each other’s lives. That’s a perspective I’ll bring to work with me everyday.


If you have any questions or concerns, feel free to contact Jeffrey directly at