[/mpc_textblock][mpc_textblock content_width=”100″ font_preset=”mpc_preset_1″ font_color=”#888888″ font_size=”20″ font_line_height=”1.5″ font_transform=”none” font_align=”left” margin_divider=”true”]When our son Justin was diagnosed with Fragile X syndrome at age 5, we knew we would spend the rest of our lives fighting for him, pushing to overcome the challenges he would face and helping him adapt to the world. Prior to his diagnosis, we experienced seizures and multiple trips to the emergency room, hospital stays, and consultations with specialists. We prepared ourselves for a journey that would have both its up and downs, but what we quickly discovered, after his diagnosis, was that we would not travel this journey alone. The National Fragile X Foundation (NFXF) became our partner.
“It’s better to know than not know,” became our motto to live by and the NFXF connected us with researchers, medical professionals and a large community support network of families just like ours. The support, information, resources and empathetic ear the Foundation provided helped us through the many significant challenges we faced.
The NFXF is still helping us and many other families everyday by providing all of us with knowledge and hope to keep moving forward. The Foundation also continues to educate the medical community to ensure families receive timely, accurate diagnoses and treatments because it truly is better to know.[/mpc_textblock]
I felt so strongly about the mission of the Foundation that it lead me to join the Board of Directors, where I now serve as Board President.
The key for families affected by Fragile X is research and the Foundation realizes we must take the lead in this important area. Our vision for the future focuses on raising awareness and generating funding to facilitate world-class, targeted research leading to effective clinical trials. At the same time, we must invest more in our ability to provide everyone living with Fragile X the information and resources they need to be successful and healthy throughout their lifespan. The NFXF cannot do this alone, it is up to you to help.[/mpc_textblock]
FACILITATE RESEARCH FOR EFFECTIVE TREATMENTS AND A CURE[mpc_textblock content_width=”100″ font_preset=”mpc_preset_1″ font_color=”#888888″ font_size=”20″ font_line_height=”1.5″ font_align=”left” margin_divider=”true”]Our upcoming Collaborative Biomarker Research Project is a nationwide project that combines clinical data with biological samples to create unique materials for focused biomarker research. With it, researchers can prioritize projects with the greatest potential for creating new treatments and a cure![/mpc_textblock]
STRENGTHEN OUR COMMUNITY – SUPPORT, ADVOCACY, AND AWARENESS[mpc_textblock content_width=”100″ font_preset=”mpc_preset_1″ font_color=”#888888″ font_size=”20″ font_line_height=”1.5″ font_align=”left” margin_divider=”true”]Many have heard me say “families come first” and strengthening our community through support, advocacy, and awareness is the key to our success. The nearly 50 local chapters of our Community Support Network across the US are committed to making sure that families affected by Fragile X in their local communities know that they are not alone. These chapters work tirelessly to provide social and educational activities that make living with Fragile X a life of hope and possibilities. We have already begun investing more in this network to lead the chapters into the future.[/mpc_textblock]
ALL WE NEED IS YOU![mpc_textblock content_width=”100″ font_preset=”mpc_preset_19″ font_color=”#888888″ font_size=”20″ font_line_height=”1.5″ font_align=”left” margin_divider=”true” animation_in_type=”transition.bounceIn” animation_in_offset=”80″ animation_in_duration=”1500″ animation_in_delay=”500″]We can do this because together we are truly stronger! Our entire organization—me, my fellow board members, the NFXF team, Community Support Network chapter leaders, and every volunteer—and everyone affected by Fragile X, needs you! I’m asking you to please give generously this year—not just because of what the Foundation has done for my family, but what it has done for every family living with Fragile X. This unexpected Fragile X journey we find ourselves traveling holds many challenges, but the NFXF is committed to moving the dial on research and supporting families and individuals throughout the lifespan.
Thank you for your support. Together, we’re stronger!
President, Board of Directors[/mpc_textblock]
The NFXF will not share or sell a donor’s personal information with anyone else, nor send donor mailings on behalf of other organizations.