Last year, 92.7 WOBM reporter Vin Ebenau sat down with Allie and Jonna Crocker, two sisters who live around the Jersey Shore, to discuss their experience with rare diseases. The sisters, who each have different conditions, created the Fighting H.A.R.D. non-profit organization to assist others in the Jersey Shore within the rare disease community. Now, the sisters are seeing another supporter in their midst: Ocean County Assemblyman Ron Dancer. Dancer submit a bill to develop a Rare Disease Advisory Council and, excitingly, the bill recently advanced through an Assembly Panel.
Fighting H.A.R.D: A Rare Disease Foundation
When Allie Crocker was younger, the now Howell High School student was diagnosed with both rheumatoid arthritis (jRA) and Crohn’s disease. However, the Crockers soon noticed a problem: while some foundations offered help for specific conditions, no foundations seemed to offer more widespread and comprehensive support.
Allie and her family developed the Fighting H.A.R.D. Foundation – and just in time, as Jonna was soon diagnosed with SMA Syndrome and gastroparesis, a disorder that affects the movement of food between the stomach and small intestine.
The Fighting H.A.R.D. Foundation describes itself as:
Fighting HARD Foundation became an official 501c3 organization in August of 2015 after we searched for a support group to help kids with rare diseases and chronic illnesses. When we were not able to find one, we decided to create an organization of our own where we could bring children of the rare disease community together to help them know they were not alone in their battle!
Crohn’s disease
Researchers believe that genetics and immune function play a role in Crohn’s disease, a condition under the umbrella of inflammatory bowel disease (IBD). Crohn’s disease is characterized by digestive tract inflammation, particularly in the ileum and colon. Typically, people develop Crohn’s disease symptoms before 30 years old. Risk factors include a family history, smoking cigarettes, living in an urban area, being white, or having Ashkenazi Jewish heritage. Symptoms include:
- Delayed growth
- Unintended weight loss
- Appetite loss
- Fatigue
- Abdominal pain and cramping
- Diarrhea or bloody stool
- Fever
- Anal drainage
- Malnutrition
- Bowel obstructions
- Mouth sores
Gastroparesis
Doctors are not sure of the exact cause of gastroparesis, a disorder affecting the way food moves between the stomach and small intestine. Normally, the muscles around the gastrointestinal tract constrict and relax to move food around. But these muscles function improperly in those with gastroparesis, meaning the food is not transported or transported extremely slowly. As a result, the stomach fails to empty properly, causing a host of health issues. Symptoms include:
- Nausea and vomiting
- Persistent feeling of fullness
- Acid reflux
- Abdominal pain
- Bloating
- High blood sugar levels
- Appetite loss
Rare Disease Advisory Council
Currently, Dancer’s bill (A4016) would help to create a Rare Disease Advisory Council in New Jersey. The Council, which would have 20 members, would perform a comprehensive study to understand and analyze the issues facing the rare disease community. Through this study, the Council would be able to help the government fulfill unmet patient needs.
According to the National Organization for Rare Disorders (NORD), if the bill passes, New Jersey will join 16 other states who already have established Rare Disease Advisory Councils. It also joins the ranks of 10 other states who are currently working to establish these Councils. 24 states have not yet established, or are not working on establishing, these councils.
However, says Dancer, this type of Council is extremely important, especially as the country is dealing with the COVID-19 pandemic. While scientists are still working to understand COVID-19, much research suggests that those with rare diseases are more at risk of having severe outcomes. Being able to understand how to support the rare disease community during this time could save lives.
