Dear Reader,

My name is Nakita Parnacher, I have a 12-year-old son named Bryson, and 10-year-old daughter named Peyton. We are from the small town of Ada, Oklahoma. Bryson started having frequent nosebleeds and bruising at the age of 4, in 2015. We would find out later that year, he is affected with a diagnosis called von Willebrand Disease (vWD), an inheritable bleeding disorder. It was with his diagnosis that we would uncover more family history. Even still, my children and I are new to joining the Bleeding Disorder community. I dove headfirst into volunteering by joining the Board of Directors last year. It is my intention to show my kids that we are all here to contribute our gifts towards something greater than ourselves.  

With that being said, I wanted to shed some light on the Oklahoma Chapter for Bleeding Disorders, if you’ve never heard of it. The Oklahoma Hemophilia Foundation (OHF) is a Non-Profit Organization dedicated to providing resources to families in Oklahoma that are affected by bleeding disorders. We are one chapter of many throughout the United States. Our affiliation is with The National Bleeding Disorder Foundation, previously known as The National Hemophilia Foundation. It is through the efforts of our local chapter and national chapter that we advocate and provide resources for community members that need assistance. 

VWD in a nutshell either doesn’t have a specific clotting protein, has a low number, or it doesn’t work properly to clot and stop a bleed. This clotting protein is called von Willebrand Factor. While it is the most common bleeding disorder, it only affects up to 1% of the US population and it is the most complicated with many subtypes ranging from mild to severe. With warning signs, sometimes not showing up for years. Von Willebrand Disease occurs EQUALLY to all genders, races, and ethnicities. Treatment for vWD is costly and still undergoing research. 

 In Oklahoma, we only have ONE Hemophilia Treatment Center, located in Oklahoma City. There are many of us that live hours away and for emergency treatment, going to our local hospital is the quickest option. The downside of that, is that the treatment for Bleeding Disorders is under the specialty of Hematology. Most Providers aren’t familiar with the products and/or the course of action to treat bleeds. The local hospitals and local pharmacies do not carry the products we need. 

Bleeding Disorders have no cure, but they are treatable. Treatable, living life as "normal" as possible for thousands of kids and adults alike. For most affected, our days revolve around the next bleed and access to care. For others, the worst-case scenarios are always looming in the back of our minds.  

On June 1, the Oklahoma Hemophilia Foundation will combine fundraising efforts along with raising awareness with our community, Takeda, BioMarin, Sanofi, Bayer, Genentech, The National Bleeding Disorder Foundation (formerly NHF), and Hemophilia Alliance. This is a day where our community and everyone who supports it come together to celebrate each other, support each other, and share a beautiful day in one place. 

What I am asking is for you to consider donating toward my personal goal of $1,000. Every bit of what is raised stays within our community to assist with cost of treatments, ensuring access to health care, advocacy efforts, and educational resources for the community.

Here are ways you can make a donation:

• Donate online at https://www.okhemophilia.org/give
• Send a check to:

Oklahoma Hemophilia Foundation 

9524 E. 81st. St. Ste. B1510 

Tulsa, OK 74133

If you have any questions, please do not hesitate to contact me. I thank you in advance, for considering my request and for supporting Oklahoma Hemophilia Foundation. 

Sincerely, 

Nakita Parnacher