By Allie Crocker || Contributing Writer
Rising junior Alexandra (Allie) Crocker is the founder of Fighting H.A.R.D. Foundation, a New Jersey-based nonprofit with the mission of helping children with rare diseases and chronic illnesses know they are not alone. Allie and her sister Jonna, a rising sophomore at Cornell University, were inspired to start this organization at 12 and 11 years old due to their own experiences in battling rare diseases. The feeling that sparked this whole journey was one of isolation.
Navigating life with a rare disease is not easy. While it is different for everyone, there are some common threads that connect all patients. According to the National Organization for Rare Disorders (NORD), some of the most significant struggles include a lack of FDA-approved treatments (which only 5% of the 8,000+ rare diseases have), insurance coverage for these medications and supplies needed for survival, and very often, a timely diagnosis. It takes an average of 8 years and 10 specialists to receive an accurate rare disease diagnosis. All of these things lead to feelings of isolation, confusion, and frustration among families.
This is Allie’s “why” behind Fighting H.A.R.D. Foundation. When it first became an official nonprofit in August 2015, Allie and Jonna sent small care packages to local families who had a child with a rare disease. These pick-me-ups were great, but the sisters set their sights on a much larger goal. They wanted to be able to provide financial support, medical supplies, and funds for emergencies — all to change the lives of children battling these lifelong illnesses.
To date, the foundation has raised over $450,000. Thanks to amazing sponsors and donors within the community and heightened social media awareness, Fighting H.A.R.D. Foundation now consistently provides financial support for over 40 families in Monmouth and Ocean counties in central New Jersey. This includes providing dinners to families after a long day of treatment, covering travel and hotel expenses for specialized medical care, and contributing to the cost of specialized medical equipment.
Fighting H.A.R.D. Foundation also sends care packages all across the country and provides emotional support for any child who has a rare disease that reaches out. This comes in the form of virtual support groups, phone calls, and general pick-me-ups to remind these children that they are never alone.
The foundation holds many fundraisers throughout the year. These include a clothing drive, a virtual run in celebration of Rare Disease Day, and a Fighting H.A.R.D. “Fore” the Kids golf outing. Sponsors, donors, and members of the community have come together since 2015 and helped the organization to grow significantly. And now, in 2023, the foundation is on track to hit the half-a-million-dollar mark! This milestone is named the “Drive for Five”, and the two sisters from Howell, New Jersey are hoping to continue raising awareness and helping more children with rare diseases to know they are not alone. To read more about Fighting H.A.R.D. or to get involved in the Drive for Five, check out their website here. Feel free to email info@fightinghardfoundation.org with any questions or to share your rare disease story!
Rising Sophomore Allie Crocker is a Contributing Writer. Her email is acrocker@fandm.edu.
