LIFEBLOOD – Summer 2011
Download the entire edition of LIFEBLOOD (Summer 2011) [19MB]
Consumer Spotlight (Abe Hobstetter) – At 91 Years Old, Plain City Man Reflects on Advancements in Hemophilia
Born in April of 1920, Abe Hostetter wasn’t supposed to live into his 30s. After all, doctors didn’t even know that defective platelets weren’t the cause of bleeding disorders until 1937. But 91 years later, Abe continues to defy the odds and now stands proudly as the oldest living person with hemophilia in the country … by one month. [read more]
Donor Spotlight (Jermaine Davis) – Jermain Davis and Family Organize Chinese Auction to Benefit Chapter
Nine-year-old Jermaine Davis from Lancaster, Ohio is learning about charity at a young age. He, along with some help with his family, recently held a Chinese Auction, which allowed them to make a donation of $650 to the Central Ohio Chapter of the National Hemophilia Foundation! [read more]
Volunteer Spotlight (Destiny Blair) – The Blairs are Pounding the Pavement in Support of the Hemophilia Walk
As a parent, it is always discouraging to take your child to the doctor just to be told there is nothing wrong with them when you are almost certain there is. This is a feeling Ladonna Leasure knows all too well. Ladonna’s daughter, Destiny Blair, is seven years old, loves the color pink, adores SpongeBob, and has six severe nosebleeds a month. Destiny is challenged with both VWD and Ehlers-Danlos syndrome, a group of inherited disorders that causes extremely loose joints, hyperelastic skin that bruises easily, and easily damaged blood vessels. [read more]
President’s Corner - The Importance of Pointing People Toward HTCs
As an individual with a bleeding disorder, I know how important it is to network within our community, share information, and seek out the best resources for ourselves and our peers. Unfortunately, that is a lesson I had to learn the hard way. Some of you may have heard this story, but it bears repeating because it can used as a lesson to people in the bleeding disorders community. [read more]
Medical News – Diseases of Aging Now a Problem in Hemophilia
With better treatments available, many patients with hemophilia are living longer, making them susceptible to the typical diseases of aging, including heart disease. [read more]
Research News – Research at OSU Leads to Long-Lasting Factor Products
Biogen Idec, a drug manufacturer, may be on the cusp of a huge breakthrough in the way hemophilia is treated. They have both a long-lasting Factor VIII product as well as a long-lasting Factor IX in the third and final phase of clinical trials, a feat that is extremely expensive, time-consuming, and hard to achieve for pharmaceutical companies. These therapies are expected to be sent to the FDA for approval in 2012.
If these drugs do make it to the market, they can give some of the credit to researchers at the Ohio State University Medical Center, who discovered that clotting factors could be fused with antibodies, enabling the factor to last longer in the blood than current products allow for. [read more]
Advocacy News – Ohio Voters to Decide if They Must Comply with Federal Healthcare Law
Ohio voters will decide in November whether a proposed state constitutional amendment should be enacted to overturn some portions of the Patient Protection and Affordable Care Act signed into law last year by President Barack Obama. [read more]
Program News – New Support Group Meetings are a Walk in the Park
What comes to mind when you think of a typical “support group meeting”? People sitting in a circle sharing personal hardships and brimming emotions? Support group meetings can be a great medium to have healthy, topical, and candid discussions that you can’t necessarily have with your close friends or even family. Let’s face it though, not everyone is very keen to the idea of the run of the mill support group, right? Sharing your concerns, emotions, and sentiments can be cathartic, but also scary for some people. [read more]
National News – Steps for Living Site Unveiled
The Steps for Living website was created by the National Hemophilia Foundation in collaboration with Pfizer and with the help of parents, patients, and healthcare professionals from the bleeding disorders community. This site will prove to be the go-to online bleeding disorders guide with age-appropriate tips, tools, and resources for everyone. [read more]
Chapter News – Chapter’s Merger with its Parents Organization Finally Complete
Around four years ago, the chapter’s board members came to the realization that in order for the chapter to survive and even thrive, it needed to have a professional staff in place to carry out the day-to-day duties inherent in running a non-profit organization. Of course, the greatest obstacle was how to pay for this staff, but there were also a wide variety of other issues that would need to be sorted out in order to get to the next level.
So when the National Hemophilia Foundation (NHF), headquartered in New York City, proposed an option to merge with them in return for a considerable amount of assistance in getting the chapter up and running in a rapid but controlled fashion, the timing was too perfect to pass up. [read more]
Event News – VWD Retreat Draws Huge Number of Families, Receives Rave Reviews
NHF staff members had to sleep on couches. Corporate sponsors had to stay in nearby hotels. A third lodge had to be rented at the last minute. All of this was due to overwhelming demand to attend the VWD Retreat for children 0-18. [read more]
Event News – Time is Running Out for Would Be Hemophilia Walkers
The 2011 Central Ohio Hemophilia Walk is going to be held on Sunday, October 23rd, which means that anyone with an interest in participating in the Walk should be starting to get their team together and planning how they are going to raise money for their team. [read more]