Phil Jackson
The strength of the team is each individual member. 
The strength of each member is the team.

National Fragile X Foundation Team

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Tony Ferlenda

Chief Executive Officer

Tony brings more than 20 years of non-profit leadership experience, fundraising skills and operational knowledge to the Team. Prior to joining the NFXF, Tony was the CEO of the American Red Cross Biomedical Services of New York/Pennsylvania for 12 years. Over his career, Tony has held the position of CEO for the Sarcoma Foundation of America, Director of Development and Communications for Onondaga County Arc and Development Officer for Syracuse University. Tony has also served on several non-profit boards. He holds a BA in Communication Studies from State University of New York and an MA in Public Administration from Syracuse University. Outside of his work and volunteer efforts, Tony enjoys running, playing tennis and spending time with his family.

Linda Sorensen

Linda Sorensen

Chief Operating Officer

Linda has been a member of the NFXF team since 2004 and currently serves as the Chief Operating Officer. 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 a MS degree in Adult Education and Organizational Development. Linda greatly enjoys serving the Fragile X community and the successes and challenges of helping lead the NFXF forward. She loves the company of her family and friends and enjoys golf, along with entertaining, traveling and reading great books.

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Jayne Dixon Weber

Director of Education & Support Services

Jayne has been a member of the NFXF team since 2007 and currently serves as the Director of Education & Support Services. She has two children, an adult son with Fragile X syndrome and a daughter, who is an occupational therapist. In addition to assisting with the development of the NFXF’s “Adolescent and Adult Project,” Jayne authored the book “Transitioning ‘Special’ Children into Elementary School” and is the editor for the book “Children with Fragile X Syndrome: A Parents’ Guide.” She is the co-leader of the Colorado Fragile X CSN group. Jayne likes to read, enjoys photography and goes for a walk every day.

Paula Lipford

Paula Lipford

Volunteer Program Director

Paula Lipford has more than 15 years of experience in volunteer and community engagement, specializing in connecting a volunteer’s passion to action. Paula spent nine years as the Director of Volunteer and Community Engagement with the National Multiple Sclerosis Society. There she developed a comprehensive engagement program that connected volunteers to innovative leadership opportunities, leading to significant results in increased fundraising, awareness, programs and advocacy.Paula has served in leadership roles with several health and education-focused organizations. She recently relocated to the Twin Cities area and enjoys exploring the area, spending time with her family, reading, writing and walking briskly with her newly adopted dog, Molly.

Robby Miller

Robby Miller

Director of Clinic Relations

Robby has spent over 40 years helping children with special needs, their families and the professionals who work with them. He has learned that it takes purposeful effort to stay focused on the ideals and values that led to the creation of a human service organization. Robby is particularly interested in how families learn about, access and receive meaningful services from competent professionals, organizations and institutions. This interest led to his co-founding the Fragile X Clinical & Research Consortium. In his spare time, you’ll find Robby singing and playing rhythm guitar in a rock band with his pals.

Karen Race Photography

Dan Whiting

Director of Communications & Government Relations

Dan has been a member of the NFXF team since 2017 and currently serves as the Director of Communications and Government Relations. He has nearly 20 years of experience in public policy and communications, serving on both the legislative and communications staff of a US Senator for 11 years, in the Bush Administration as Chief of Staff at the USDA Natural Resources Conservation Service, supporting advocacy at a national trade association, and, for nearly five years, as a senior strategist for communication initiatives across the DOD. He is excited to be involved with the NFXF because it is filled with passionate and involved parents trying to help each other. He loves spending time with his family and friends and dreams of either being an artisan woodworker or comedy writer.

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Kimberly Powell

Development Manager

Kimberly has worn many hats since her son’s Fragile X diagnosis in 2004. Kimberly immediately joined the local support group in Georgia, organized fundraisers and awareness events and served as the local co-chair for the 2006 International Fragile X Conference. In 2009, she served on the Board of Directors and became the Community Support Network Leader for Greater Atlanta Fragile X. She has nearly 20 years’ experience in not-for-profit development at an array of organizations varying in size and budget, from grass-roots to educational institutions to national foundations, as both a paid professional and a volunteer. She has been skydiving four times and enjoys time with family, running and the sand between her toes.

Holly Usrey-Roos

Holly Usrey Roos

Volunteer Program Manager

Holly started as the LINKS program assistant for the National Fragile X Foundation in 2010 and became the LINKS program coordinator in the fall of 2012. In early 2014, the LINKS Support Network was rebranded as the Community Support Network (CSN). Holly has two children, a son and a daughter, both with Fragile X syndrome. In 2006 she founded the Central Illinois Fragile X CSN group to bring families together and raise awareness about Fragile X in the region. She currently acts as co-leader of the group. Holly has been a speaker at several conferences, including the NFXF’s international conferences, on topics such as “Working with Your School,” “Media Relations,” “Fundraising,” and “How to Talk to Your Child’s Classmates About Fragile X.” The last of these was made into a podcast.

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David Salomon

Communications Manager

David joined the NFXF in October 2007. He works with the communications team to coordinate the Foundation’s website, social media emails and other online communications. He helps put together the year’s strategic plan for communications. David is a graduate in Asian American Studies at UC Davis and has completed studies in computer network technology. He loves comic books and dancing.

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Jennifer Frobish

Digital Content Publisher

Jennifer studied communications at Northern Illinois University and has a Masters in higher education administration from Illinois State University. Her career has focused mainly on higher education, professional development and training. In addition to her team role, Jennifer serves as the Regional Leader for the Sibling & Self-Advocate Network. Jennifer and her husband live in St. Louis with their children, Sophia and Matty. Sophia is unaffected by Fragile X but lives with Aspergers, and Matty has Fragile X syndrome. They are active with the Fragile X Resource Center of Missouri. Jennifer loves watching Alabama football, spending time with family, baking and cheering on the Cardinals.

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Amie Milunovich

FORWARD National Coordinator

Amie joined the NFXF in 2015 as National Coordinator of the Fragile X Online Registry and Accessible Research Database (FORWARD). She has eight years of experience coordinating clinical research trials. Amie was a Research Assistant and Research Coordinator for numerous Clinical Trials in the Nuclear Medicine Dept. of Sutter Hospital and a Senior Clinical Research Associate in the Pediatric Hematology/Oncology Dept. of Stanford’s Lucille Packard Children’s Hospital. Amie holds a BA degree in Family and Consumer Science and is a SOCRA Certified Clinical Research Professional. She enjoys Bikram Yoga, painting, cooking and spending time with family and friends.

Eric Welin

Eric Welin

Web Developer

Eric joined the NFXF’s team in early 2011 to overhaul the website, fragilex.org. He has more than 15 years experience in web development. Eric now serves as the Foundation’s web developer and a member of the communications team. He has a biological child and an adopted child, both living with Fragile X syndrome. He also enjoys playing basketball and running, both of which his oldest son is into.

Community Support Network Regional Leaders

Paula Fasciano

Paula Fasciano

Northeast Region

Paula began serving as the leader of the New Jersey Fragile X Community Support Group in 2014. As the co-leader, she has worked in conjunction with the NY group to organize biennial educational conferences since 2007. Paula is also the CSN Liaison to the NFXF Board of Directors, where she represents the CSN and sits on the Development Committee. Paula and her husband Anthony have two teenage sons, Matthew and Benjamin living with FXS. Paula also has an adult brother with FXS and an adult sister with FXS, autism and seizure disorder. Paula lives in New Jersey.

Michelle O'Dell

Michelle O'Dell

Northwest Region

Michelle has been a co-leader for the Fragile X Association of Washington State for the past three years. Michelle co-founded the Highline Special Needs PTA in 2012, serving the special needs community within her school district. She served two years as President, Treasurer and currently chairs the Family & Community Engagement position for the PTA. She has attended NFXF Advocacy Day events and International Fragile X Conferences. Michelle and her husband, Jeff, have one son, Nathan, who lives with FXS. Her father, Bruce, lived with FXTAS.

Joe Garera

Joe Garera

Mid-Atlantic Region

Joe began serving FX families in the Cincinnati community in the late 90s by forming a support group at Cincinnati’s Children’s Hospital, which later became the Greater Cincinnati Fragile X CSN. Joe has expanded the reach of the NFXF through the Tri-State Fragile X Alliance, serving Kentucky, Indiana and central/southern Ohio. He was a charter member of the LINKS Advisory Council and Strategic Planning Team. Joe organizes fundraisers and awareness opportunities to help support local Fragile X efforts. Joe and his wife, Leslie, have a young adult son, Nick, living with FXS.

Matt Rhodes

Matt Rhodes

Southeast Region

In 2007 Matt and his wife Beth formed the local support group for Alabama. They have organized fundraisers, social and educational events in and around the Birmingham area to support and raise awareness for FX. Matt has presented at local events, state conferences and International Fragile X Conferences. Matt participates in NFXF Advocacy Days and has also advocated on the state level. His family has been co-featured in local articles to promote awareness about FX. Matt and Beth have two children, Samantha and James, both with FXS. They reside in Hoover, AL.

Missy Zolecki

Missy Zolecki

Central Region

Missy is a co-leader of the Greater Chicago Resource Group. She has been an active volunteer since 2010 and accepted the Central Regional Leader role in 2013. Missy has organized several fundraisers and educational workshops while working closely with the Fragile X Clinic at Rush University over the years. She speaks to educators, professionals and service organizations about FX and has presented at past International Fragile X Conferences. Missy is the mother of three children. Her eldest son, Matt, lives with FXS. Missy has worked as an emergency room nurse for more than two years.

Laureen Majeske

Laureen Majeski

West Region

Laureen Majeske has been the President of the Fragile X Association of Michigan for the past 14 years. They work closely with the Fragile X Clinic at the University of Michigan. Lauren has volunteered for the NFXF as a committee member, presenter at conferences, and participant in NFXF Advocacy Days. Laureen was the local conference chair for the International Fragile X Conference in Detroit. She has a BA in Telecommunications from Michigan State University and worked in Hollywood for major film and television studios. She is the mother of three grown children with FXS and autism and resides in Michigan.

Diane Southard

Diane Southard

Southwest Region

From 2009 until 2017, Diane served as the president of the Fragile X Resource Center of Missouri. She speaks with local schools, universities and businesses about Fragile X, educating others on acceptance and support. In 2006, Diane graduated from the Missouri Partners in Policymaking Program. She also holds a BS from Truman State University. Diane is married to Scott and is the mother of eight children. Her sons, Evan and Joshua, and daughters, Gigi and Ava, live with FXS. Her family resides in the St. Louis area.