This press release template is intended to be a companion to personalized outreach to your local press (newspaper, radio, television).

The [Insert family name] Family and the INADcure Foundation Support Rare Disease Day® and Join Global Movement to Raise Important Awareness for Rare Diseases

[CITY], [STATE]—[Month] [XX], 2024 — The [Insert family name] family has joined forces with the 25-30 million Americans living with a rare disease and health care advocates around the world for Rare Disease Day® on February 29. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the unique challenges people face.

Our family will be helping the INADcure Foundation raise awareness for Infantile Neuroaxonal Dystrophy (INAD) and other forms of PLA2G6-Associated Neurodegeneration (PLAN). INAD is a devastating and fatal pediatric neurodegenerative disease that robs children of their language, muscle strength, and cognition. As infants, children with INAD start meeting typical milestones, and then between 6-18 months, they slowly start to lose those benchmarks. Life expectancy is only 5-10 years, and at this time, there is no known cure or treatment.

According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people in the United States. PLAN is an ultra-rare disease, affecting an estimated 5,200 cases globally, primarily affecting young children. Our [son/daughter] was diagnosed with INAD in [month, year] after months of numerous appointments with countless doctors. At [insert number] months old, our child was [losing words once spoken with ease, having difficulty pulling herself up, etc].

There are more than 10,000 rare diseases currently identified, and approximately 95% of them are still without FDA-approved medical treatments. The INADcure Foundation is currently raising seven million dollars for its gene therapy research with the ultimate goal of being the first gene therapy clinical trial for PLAN in 2025. Pharmaceutical and biotech companies are less likely to invest in trials for drugs or gene therapies for ultra-rare diseases because of the limited financial incentives associated with such small patient populations. Thus, it is up to the INAD families and their communities to raise these funds.

Rare Disease Day occurs every year on the last day of February (February 29 in a leap year) — the rarest date on the calendar — to underscore the nature of rare diseases and what patients and families face. This year, the INADcure Foundation is launching its “Working On A Miracle” campaign on Rare Disease Day (February 29, 2024) with the hopes of bringing more attention to children suffering from INAD and, if all goes well, a true miracle can be sent their way.

Please visit www.workingonamiracle.org to help us raise much-needed funds for our pre-clinical gene therapy program. To learn more about INAD, please go to www.inadcure.org.