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Help arrives as New Jersey now has Rare Disease Advisory Council mybeachradio.com - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from mybeachradio.com Daily Mail and Mail on Sunday newspapers.
Head to the mini-golf course or driving range, whatever you need to practice your swing, because you ll need it come August. The Fighting H.A.R.D. (Having A Rare Disease) Foundation is holding a Golf Fundraiser on August 10 at Pebble Creek Golf Club in Colts Neck and you are invited. Get our free mobile app They also continue to shine a light on rare diseases to help others know they re not alone as well as push for research and funding to be able to help others. Allie, who is currently a senior at Howell High School, became ill as a child and over the years has battled Crohn’s Disease, Juvenile Rheumatoid Arthritis and Anxiety. ....
Get our free mobile app You may have seen or heard their story by now, but it s worth revisiting over and over again because their mission is that important and they are that inspiring. Allie and Jonna Crocker, of Howell, joined me in the newsroom discussing their Jersey Shore non-profit a couple years back to discuss their Fighting H.A.R.D. (Having A Rare Disease) non-profit foundation which helps other kids/teens like them who are battling rare diseases, an unknown and overlooked field in certain circles, but they are bringing the issues this community is battling to light. ....
Senator Kean s legislation, ( S-2682) was approved Tuesday by the Senate Health, Human Services and Senior Citizens Committee and would, upon further approval, ensure that anyone suffering from unusual conditions receive suitable care by establishing the New Jersey Rare Disease Advisory Council. “The ongoing pandemic makes it more vital than ever to help those who are impacted by rare illnesses that are often difficult to diagnose and treat,” Senator Kean (R-21) said in a statement. “Genetic mutations are responsible for causing many of these ailments that can be passed down through generations, often resulting in suppressed immune systems or respiratory problems for patients. This makes them especially vulnerable to COVID and its life-threatening effects.” ....
Disease) to help children with rare diseases and chronic illnesses at the Jersey Shore. The Fighting H.A.R.D. Foundation came to be after Allie (now 18-years old) became ill earlier in her youth with Crohn’s Disease, Juvenile Rheumatoid Arthritis and Anxiety. It was then that one of her doctors instructed her to find a foundation that could provide the all around support she needed. While there are some organizations who provide assistance to children with certain rare diseases, the Crocker s couldn t find one that supported all rare diseases. That s when The Fighting H.A.R.D. Foundation was born at a time when just Allie was sick but it would soon be something her younger sister Jonna (now 17-years old) needed just as much. ....