My Nonprofit Reviews

In the late spring of 2012 my granddaughter, age 5, was diagnosed by a local Rheumatologist with Juvenile Dermatomyositis (JDM). We had never heard of this disease before. During my daughter’s research she found the Cure JM Foundation website. This website offered considerable information about JDM. I watched a video on the website which described my granddaughters symptoms very well. The Cure JM website provided much needed support for my daughter in her search for a diagnosis of my granddaughter’s symptoms. I never expected to see so much detailed and relevant information about a rare disease in one place.

When my granddaughters symptoms did not improve with local treatment, my daughter researched other treatment options. As a result, she found that Cincinnati Children’s Hospital (CCH) was a leading hospital in the treatment of auto immune diseases such as JDM. My granddaughter was in critical condition, and was immediately admitted to CCH for aggressive treatment with powerful drugs. As a result of this aggressive treatment protocol by the dedicated CCH staff over 8 years, her disease was brought under control. My granddaughter will be 15 in a couple of months, and currently has no active disease. However, JDM could raise its ugly head again any time.

My daughter, granddaughter, and I attended our first Cure JM National Education Conference in Chicago in 2013. It was an extremely valuable experience to interact in person with other patients, parents, grandparents, Cure JM Foundation board members, and doctors treating JDM. It was even more important to my 6 year granddaughter to see other kids with the same disease. She learned that she was not alone in fighting JDM because of the Cure JM Foundation. Attending this conference and a subsequent conference in Washington DC in 2018 solidified our support and appreciation for the Cure JM Foundation.

Since I was introduced to the Cure JM Foundation nearly 10 years ago, the Foundation has raised several million dollars from private donations for research and support of the organization. Nearly 90% of the dollars raised support research grants on a search for better treatments and a better understanding of the disease. Cure JM support of research, clinical studies, expansion of Centers of Excellence, and formation of a clinical care network continues to move ahead. Each of these programs continue to have a positive impact on treatment options and availability of treatment to more patients. Several new treatments may be available in the foreseeable future as a result of the investment by Cure JM Foundation in research. In addition to the financial support the Foundation provides, it provides tremendous support for families of kids with JDM by providing information found no where else. The Foundation is small, and very effective. The last couple of years have been difficult due to the COVID-19 pandemic. The pandemic has not diminished the effort and enthusiasm of Cure JM staff and volunteers. The business of Cure JM moves ahead with frequent ZOOM calls and webinars. It is efficiently run by its dedicated staff and volunteers who work tirelessly to find better treatments for their kids. It is my pleasure to support and recommend the Cure JM Foundation.

In the late spring of 2012 my daughter noticed my granddaughter, age 5, had become lethargic, and complained of her legs hurting. It took several weeks of research by my daughter working with her pediatrician to determine a preliminary diagnosis. Brynn was examined by a local Rheumatologist, diagnosed with Juvenile Dermatomyositis JDM. She was in critical condition, and admitted to the hospital for aggressive treatment with powerful drugs. We had never heard of this disease before. During her research she found the Cure JM Foundation website. This website offered considerable information about JDM. I watched a video on the website which described my granddaughters symptoms very well. The Cure JM website provided much needed support for my daughter in her search for a diagnosis of my granddaughter’s symptoms. I never expected to see so much detailed and relevant information about a rare disease.

My daughter, granddaughter, and I attended our first Cure JM National Education Conference in Chicago in 2013. It was an extremely valuable experience to interact in person with other patients, parents, grandparents, Cure JM Foundation board members, and doctors treating JDM. It was even more important to my 6 year granddaughter to see other kids with the same disease. She learned that she was not alone in fighting JDM because of the Cure JM Foundation. Attending this conference solidified our support and appreciation for the Cure JM Foundation.

My granddaughter is now 13, and doing very well. However, JDM could raise its ugly head again any time. Since I was introduced to the Cure JM Foundation 8 years ago, the Foundation has raised several million dollars from private donations for research and support of the organization. Nearly 90% of the dollars raised support research grants on a search for better treatments and a better understanding of the disease. Several new treatments may be available in the foreseeable future as a result of the investment by Cure JM Foundation in research. In addition to the financial support the Foundation provides, it provides tremendous support for families of kids with JDM by providing information found no where else. The Foundation is small, and effective. It is efficiently run by its dedicated staff and volunteers who work tirelessly to find better treatments for their kids.