Jeff Leider, of Elmwood Park, New Jersey, has been on the forefront of Rare Disease Awareness for a little over five years now. His passion for advocacy began when his sons were diagnosed with MPS II/Hunters Syndrome. Since that heart wrenching day of diagnosis, he has worked tirelessly not only for his children but all children with Rare Diseases.
He started with creating Jason and Justin’s Journey to bring awareness to his family’s rare disease diagnosis. Jeff’s tenacity for getting his children’s disease a household name landed his family’s story on ; ABC, Fox, CNN, and NJN as well as in countless newspaper and magazine articles. Jason and Justin’s Journey also has done many very successful fundraising events to help cover the continued medical expenses that come with a rare diagnosis.
That wasn’t enough for Jeff; he wanted to help as many rare families as possible. The fervor continued. Jeff is the President and Founder of the Let Them Be Little X2 Foundation. Since inception, both organizations have grown substantially, not only for the Leider family but for all families inflicted with Rare Diseases.
His countless visits to the New Jersey State Capital as well as Washington, DC have made strides in the MPS World throughout this country. Mr. Leider has been on the forefront of bringing legislation to our governmental agencies. With Mr. Leider’s assistance and leadership a new law, The Let Them Be Little Act, providing testing of MPS I & MPS II in newborns, was recently signed into law by Governor Chris Christie. This is only the second state in the Union to implement this law.
Mr. Leider has also been an integral part, with the support and guidance of Congressman Bill Pascrell (D-NJ9), in persuading the FDA and Shire Pharmaceuticals to open a clinical trial, allowing nine children diagnosed with Hunters Syndrome a chance to receive experimental drug to halt disease progression.
Mr. Leider is also now employed by the Food & Drug Administration (FDA) as a patient representative. He speaks to large and small groups bringing awareness to rare diseases as well as inspirational presentations to motivate youth. He serves on the Board of Directors of Rare New Jersey, The Hunters Syndrome Research Coalition, and is also a Member of the MPS Society. Locally Mr. Leider is a Board Member for the Elmwood Park Youth Football Bombers and Officer of the Elmwood Park Little League. In November 2014, Mr. Leider was the award recipient of The Abby at the Rare Voice Awards in Washington, DC for advocacy at the State Level.
In October 2017, Mr. Leider and the Let Them Be Little Foundation was approved for grants to install playgrounds in Elmwood Park for children with special needs. This will enable all children of Elmwood Park to play together and not feel excluded.
The Let Them Be Little X2 Foundation has been providing assistance to children & their families who are in need. The Foundation is making the general public aware of Rare Diseases where they have not had a voice in the past. Mr. Leider continually states, “Our Journey Continues” and “Don’t Stop Believing”, anything is possible with desire, drive, and determination.