Jon and I are participating in the Hemophilia Walk - a fundraising event to support the Hemophilia Foundation of Oregon and the National Hemophilia Foundation. Inherited bleeding disorders are a life-long condition. PJ has Severe Hemophilia Type A. Because PJ is the first person in our family with hemophilia (30% of children born with hemophilia are due to their mother's genetic mutation), the hemophilia community in Oregon has been very helpful reaching out to us with care tips and support. Currently there is no cure, but scientists are actively engaged in finding cures and improving treatments.
That’s why I’m raising money and I hope that I can count on your support of this exciting event! Thousands of families in our community, and across the country will benefit from your support and the success of the Walk. While Jon and I are lucky that we have great health insurance, many families are not as lucky. 30% of the families with children affected by bleeding disorders in Oregon receive coverage through the Affordable Care Act's expansion of Medicare and Medicaid and are terrified of loosing coverage. Hemophilia treatment is expensive. Factor replacement treatment costs between $1,000 to $10,000 per dose. PJ needs his factor treatment every 2 days. Given the expense of treatments, even with great jobs, if any amendment to the ACA impacts lifetime limits on medical coverage Jon and I could be medically bankrupted providing life saving and life enabling (i.e. so he can be as normal as possible) medication to our son.
The Hemophilia Foundation of Oregon's goal is to raise $50,000 to help support programs that assist the impacted children and their families. My personal goal is to raise as much as I can to support the Hemophilia Foundation of Oregon. I’m asking for your help to reach my goal. Will you make a tax-deductible contribution by donating what you can? It’s fast and easy to make a donation on my online personal fundraising page https://hemophiliawalk.donordrive.com/participant/TeamPJ.
Your donations make a difference in the lives of people affected by bleeding disorders.
Thank you in advance for your support and together, we will make a difference.
The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. "Coming together is a beginning. Keeping together is progress. Working together is success."