Once the initial shock and fear have passed after a serious diagnosis, it's time to discuss treatment. In addition to learning about the medications to be used, the side effects to expect, and the risks involved, a patient facing a critical illness wants to know how successful treatment will be. Sometimes doctors know, and sometimes they don't. We worry about our prognosis, our children, life as we know it. Information is processed, and we decide to move forward, hoping and praying for the best possible outcome.
But what if, in addition to the stress and emotional turmoil brought on by a life-threatening disease, you didn't know if you could afford the costs associated with treatment? What if there were only a handful of doctors in the world able to treat you, and you couldn't afford to see them? What if a potential cure required you to temporarily live elsewhere, and you couldn't afford housing? Unfortunately, even with adequate health insurance, a major health crisis can present a financial burden that can be a significant obstacle to getting well.
Travel, housing, and incidental expenses are just a few of the costs Secure Harbor helps take care of in an effort to allow amyloidosis patients to receive the best possible care. Secure Harbor is a non-profit organization developed and run by Connie and Tim Hornbeck of Stow, OH to help support amyloidosis patients and their families.
Tim Hornbeck is an amyloidosis patient who underwent a bone marrow transplant in 2008. Since then, Tim still struggles with the disease, and is currently undergoing further treatment with a regimen of chemotherapy and steroid medication. In the midst of his own battle with this rare, life-threatening disease, his wife Connie makes it her full-time commitment to reach out and help other amyloidosis patients navigate the costs of travel, lodging, and meals...costs not reimbursed by health insurance, no matter how necessary they are to the treatment of amyloidosis.
There are not many medical centers in the United States equipped to properly diagnose and treat amyloidosis. Patients come from all over the world to be treated at Boston Medical Center, the Cleveland Clinic and the Mayo Clinic, just to name a few (for a complete list of centers treating amyloidosis, click here). Through fundraising and donations, Secure Harbor makes it possible for patients to obtain the treatment they so desperately need. In the past three years alone, Secure Harbor has helped more than 25 families travel to Boston Medical Center and the Mayo Clinic, and stay in hotels and patient housing for the duration of treatment.
According to Connie, the average cost of helping a patient and one caregiver can run anywhere between $500-$2500. When possible, they rely on Miracle Flight for air travel, which is approximately $100/round trip each for patient and one caregiver. Fortunately, every year Secure Harbor receives a grant of $5000 from the Chip Miller Amyloidosis Charitable Foundation (http://www.chipmiller.org/), and in 2011 alone, Secure Harbor was able to raise $12,000 in fundraising events. Neither Connie nor Tim take one cent in salaries, and never use donated funds for their own travel or Tim's treatment.
Here is the story of how Secure Harbor helped Joe Bateman, written by Joe's wife Mary:
Joe and I wanted to say how grateful we are for Secure Harbor and all they have done for us. Their help started back in July of 2009 when my husband was diagnosed with Primary Amyloidosis. I had lost my job a few months earlier due to the economy and without Secure Harbor's help I do not know how we would have survived financially during Joe's stem cell transplant at Boston Medical Center. Secure Harbor helped us with lodging and travel expenses when Joe was first diagnosed so we could travel to Boston Medical Center for an evaluation to see if he would be eligible for the stem cell transplant, and then again when we traveled back to Boston for the Stem Cell Transplant. Secure Harbor put us into an apartment for almost two months while Joe was going through his transplant, I don't know how we would have ever done it without Secure Harbor. Their generosity has continued through these past 2 ½ years not only during treatment did they help us but also for his follow up appointments every six months. We could never do enough for Secure Harbor for all they have done for us, so we have had raffles and we have had an annual horseshoe tournament for the last two years to try and raise money to give back to Secure Harbor so they can continue to help Amyloidosis patients. Not only have they helped us financially but Tim and Connie have helped us spiritually and have given us strength to continue this fight against this horrific disease.
Our thoughts and prayers are with all Amyloidosis patients and their families.
God Bless, Mary and Joe Bateman
Connie and Tim are doing amazing, selfless work as they continue to deal with Tim's additional ongoing treatment. So far, Secure Harbor has been able to help 55 families, but has an ambitious vision to support more. As doctors become more educated about amyloidosis, more patients are being properly diagnosed, but many of those can't afford to travel to treatment centers and pay for housing. In the spirit of Valentine's Day, I will be offering a free copy of Where Did Mommy's Superpowers Go? as a thank-you gift for every donation of $50 or more between now and April 30, 2012. Already have a copy? Feel free to pass it on to a friend or family member, or donate your new copy to a school or public library, school counselor, pediatrician's office, child therapist, doctor's waiting room, hospital resource library, oncology center or stem cell clinic. For donations of $100 or more, I will personalize a message and sign the inside cover of the book. Just follow these 3 easy steps:
2.) Complete the information and hit the button to Review Donation
3.) You will see a small blue link on the left to leave a personal note for Secure Harbor. Click on it, and a text box will open up for you to type your message.
*Type "Where Did Mommy's Superpowers Go?" in the box. For donations of $100 or more, please indicate the correct spelling of the person's name who will receive the book, and I will personalize and sign the copy.
Connie will make sure I get your mailing address and I'll send you a copy of Where Did Mommy's Superpowers Go? Remember, you can receive your free gift anytime between now and April 30, 2012.
As winter gives way to spring, big ad campaigns are underway on TV and in print for walks, runs and other active events to raise money for cancer research. The Avon 3-Day, Komen Walk for the Cure, The Pan-Mass Challenge, and Spin for Hope are just a few of the successful annual events that raise big money for a very well-recognized disease. As you support these organizations, please also consider Secure Harbor, a small but mighty non-profit struggling to enable amyloidosis patients get the best care in the best place, before the disease is too advanced to treat effectively. While many organizations funnel the majority of their donations to research, Secure Harbor uses every cent for the patient and caregiver and the expenses incurred by evaluations, treatment, and follow-up appointments. And as Tim and Connie keep Secure Harbor going strong in the midst of their own battle, their work is truly a labor of love.
