CF Care Fund: Providing cystic fibrosis patients with care and support.

May 6, 2009

Dear Friend of the CF Care Fund,

We all hear daily about our deepening global recession and the impact it is having on the health and well being of ordinary individuals. Many employers have closed doors or reduced their health care coverage; others have asked families to take on a significantly greater share of health care costs. This trend seem to be accelerating rapidly and nowhere is the impact more strongly felt than among those with chronic health conditions like cystic fibrosis (CF). At the CF Care Fund, the doctors and social workers with whom we work tell us that our model of giving is making a major difference in stabilizing, and even improving, the health and quality of life of people with CF. We are often the only safety net for patients and families who are barely making do as they face the daunting challenges of staying healthy and paying for major medical expenses. Perhaps these tales help tell the story.

Last year, the CF Care Fund was privileged to help a teenage boy with CF who was on round- the-clock oxygen and being evaluated for a lung transplant. His overall well being was deteriorating, along with his state of mind. The boy’s parents, who were already working multiple jobs to pay for their household expenses and out-of-pocket medical costs, could not afford the fees associated with the physical exercise that the boy’s doctors felt might be his best hope before a transplant. Enter the CF Care Fund: We paid for a membership at a gym near the family’s home where trained staff members could assist the patient with a safe and productive workout. He recently told his doctors that the only time he has any energy–in fact the only time he “feels like himself”– is when he has been to the gym.

This small gesture has not only put “life” back into this young man, but has built a level of physical strength that will help him during and after transplant.

Another story, this time involving an eleven-year-old girl with advanced CF, living with her mom, dad and teenage brother. The mother works long hours as a receptionist far from home and has been the family’s primary bread winner. The father has been the patient’s main caregiver since he was laid off from a construction job and, until recently, he worked odd jobs so that he would be available to care for his daughter. Last spring, after the girl was hospitalized for CF complications, the father sought attention for an increasingly swollen stomach: he was found to have end-stage liver disease. This upsetting diagnosis exacerbated the family’s financial and emotional stress. The mother has since been functioning as a single parent, sole breadwinner and caregiver to two very sick family members. She now works a part-time job on top of her full-time job to help make ends meet. To further complicate matters, the girl’s daily medical regimen has evolved to include nightly tube feedings, multiple medications, aerosol treatments and twice-daily chest physiotherapy. She needs constant monitoring to ensure her compliance. The girl is not eligible for Medicaid and the co-payments for her care have been on the rise. The CF Care Fund has stepped in several times during the past year to help the family with the girl’s medical expenses in an effort to maintain her health and give the mother some much needed peace of mind.

Where We Stand Today
Since last year, we’ve deepened our existing relationships with the Children’s Hospital of Philadelphia and Morristown Memorial Hospital in New Jersey, including both their adult and pediatric centers. We continue to work with New York Presbyterian Hospital and have added 1,100 new CF patients to the list of those we serve by initiating relationships with Emory University Hospital System and Denver Children’s Hospital. Of course, it isn’t merely the number of CF centers we serve or the number of CF patients we help that sets us apart. What differentiates us is the fact that we go where others don’t in offering assistance to patients and their families. Let us share an example. A major CF charity recently announced a new program that helps patients get certain medications at a lower cost. First, however, the patient has to apply to the program and wait for approval, document financial need for each expense and have the expense approved. The process is cumbersome and assistance is not assured. Further, it doesn’t cover all CF medications. In contrast, at the CF Care Fund, we are open to helping any patient, at any center we work with, get whatever medication or health and wellness care they need. There are few restrictions. If doctors and social workers who care for them tell us they have a need, that’s all the “proof” we require. The process is this simple. They send us an email. We cut a check to pay the expense. And the deal is done, often on the same day. Here’s one more example. We recently asked a much larger foundation that serves CF patients to consider supporting our work with a grant. This foundation makes an admirable difference. The foundation’s director, after reviewing our simple giving model, opined that his organization would never provide direct patient assistance “because it’s a huge and bottomless pit of need.” We agree! That is why we’re here, and why we’re doing what we do.

How You Can Help
Our wish this year is for an “informational” leg up. Many of you work for employers or have friends or colleagues who work for employers that have charitable foundations. If you do, we would be grateful if you would nominate the CF Care Fund for a grant or send us a self- nomination form. We are happy to do all of the follow-up work. Additionally, please help spread the word about our work. Several independent organizations that direct people and their monetary gifts to worthy charities have given us small grants this year, in part because they have become aware of the work we are doing with an all-volunteer staff. This awareness is critical to our ongoing success. If you have friends, colleagues, or co-workers who might be
interested in our charity, please share this letter with them.

In Closing
We close this letter with a note of profound gratitude to our wonderful Board of Directors who give their time selflessly all year long without any remuneration. They are: Judy Craig, Dr. Jack Mahler, Robert Wilen and Lisa Conway, and our Special Advisor, David Sager, Esq. We also want to single out and thank our wonderful volunteers, Karen Deutsch and Judy Miller, who enable us to carry on our daily work with the various CF Centers we serve and with the ongoing business of running a charity.

Thank you for your continued interest and support,
Ellen and Mark Arian
Co-founders, CF Care Fund