Madeline Goldsten

Chicago, IL (USA)
Role(s):
Founder/Owner/Principal

Gold Medal Foundation

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Location: Chicago
Industry: Healthcare
Year Founded: 2008
Number Employees: 1-10 people
Description: The Gold Medal Foundation is to serve the needs of long term survivors of bone marrow transplants and their primary caregivers. Through professionally led support groups, lecture series, and a monthly newsletter, the GMF assists caregivers and survivors to reach their highest physical, mental and spiritual well-being. In addition, GMF provides caregiver information, resources and a volunteer caregiver network to help improve and enhance the quality of their lives. OVERVIEW There is not a great deal of knowledge and/or understanding of what a bone marrow transplant (bmt) really means, what it does, and what diseases are treated with it. It is for these, among other issues, that The Gold Medal Foundation (GMF) has been born. While procedures have been refined and changed over the years, the treatment is very aggressive and knowledge about its effects were not really known and/or studied. People were tracked for only 5 years and the condition they survived in was not tracked at all. Once people have gone past the five year mark, without a recurrence, they are considered “cancer free.” However, the story does not end here. The chances of survival, depending of course, on certain variables, are small, at best. However, the fact is, that people are surviving longer. This is great news. Unfortunately, it’s also clear that most long term survivors of bmt’s, although cancer free, still have many medical, emotional and mental needs and issues. For many people, these issues will continue for the rest of their lives. Health and activity information about leukemia and others with life-threatening hematologic diseases who are long-term bmt survivors is sparse. However, the information that is available, states that people who receive bone marrow transplants have a markedly increased risk of developing solid tumors such as melanoma, brain and thyroid cancers. The increase in risk was also significant for cancers of the liver and other parts of the central nervous system, bone, and connective tissue. The risk rose with increasing dose of radiation received in conjunction with the transplant and was highest among those who had the highest doses. Ionizing radiation has also been linked in other studies to thyroid, bone, connective tissue, and brain cancers. Transplant recipients need to be followed indefinitely to detect early signs of cancer. Some long-term survivors have many others struggles with disturbing health problems as a result of the bmt, such as chronic graft-versus-host disease, recurrent leukemia, AIDS, secondary cancer, organ dysfunction, the effects of long term steroid use, auto-immune diseases and neurological, or psychological problems. The most frequent problems involved chronic graft-versus-host disease, cataracts, bone changes, neuropsychological disturbances, new cancers and lung and liver dysfunction. Bone marrow transplant may lead to cognitive complaints and late cognitive deficits in long-term adult survivors. For many years after transplantation, the mortality among these patients is higher than that in a normal population. Also affected are the primary caregivers and the families whose lives are also turned upside down. Since there has been so little research and knowledge about the long term affects of surviving a bmt, the lack of safety nets and how to and what type of care is necessary for survivors and/or their caregivers is still unknown, but of crucial importance. Primary caregivers, those who potentially bear the heaviest burden outside the person who actually gets the bmt, can also be strongly affected by the level of care needed and various other circumstances. Once again, the lack of safety nets is a huge issue. Bmt survivors have a pretty extensive medical history from the treatment. Adequate, sustained, specialized medical care and insurance is another area of major importance. Sometimes this is an issue not only for the survivor, but also for caregivers. Disability laws that could potentially (and SHOULD potentially) protect people are pretty black and white. Either a person is fully disabled or they are not. This leaves no room, legally, for those who are partially disabled… cancer free… but still with many health issues and history from the treatment. Another important factor is that there is virtually no medical coverage for what is considered “alternative” care such as vitamin supplements, chiropractic, massage, various types of energy work, etc. While some people might not be interested in these modalities, there is a vast (and growing) amount of people who are interested. Without medical insurance, however, this type of medical care is not available and/or gets people into debt from which it is very hard to recover. Many long term bmt survivors and their caregivers have a great deal of difficulty regaining their lives. Many have lost jobs, missed out on getting an education, ruined their credit, lost homes, friends, have feelings of isolation, post-traumatic-stress-disorder, are depressed, having difficulty coping with changes in physical appearance and the on-going stress of continuing medical needs of all kinds. There are very few safety nets and the pervading attitude is that “it’s over now, just put it behind you.” There is little understanding of the continued emotional and mental needs and there are few places to go for information, financial and general assistance. PLAN OF ACTION The following is a brief sketch of the types of services and areas the Foundation will address: THE GOLD MEDAL FOUNDATION (GMF) will address the following issues and more. *Do more research into what is available to long term bmt survivors Become a 501C3 Create a Board of Directors Establish an office and contact information Set up a web page Contact pr person *Education about bone marrow transplants Short term goal: Chicagoland Long term goal: national *Establish criteria for who gets financial assistance Some ideas for criteria: Survivors: 5 year survivor Continuing medial, emotional, mental issues (as stated by primary care physician and/or therapist) Ability to support self (disability issues, etc), work Assistance dealing with institutions (hospital/public assistance/disability) Setting up support systems Needs alternative medical care (as determined by survivor, pcp) *Caregivers: Medical, emotional, mental needs Disability Credit assistance Support Group *Raise funds to assist long term survivors and caregivers Assist people in getting needed medical care and with insurance issues Provide caregivers with a support system and extra care *Advocate for change in the Disability Law (definition of “partially disabled”) *Provide information about alternative medical care Contact volunteer practitioners, i.e., Thousand Waves Gilda’s Place *Become the “go to” place for assistance for long term bmt survivors