Collage of portraits of people

Allies of the Bleeding Disorder Community

People with no prior connection to bleeding disorders are among the community’s most passionate advocates

The bleeding disorders community is fortunate to draw support from many people who did not have a personal connection to bleeding disorders before they became involved. Some have been moved to action by hard-fought advocacy efforts, while others were motivated by hearing bleeding disorders camp stories. But whatever drew them in, these former outsiders are welcome champions within the bleeding disorders community. Meet a few of them here.

Adam Bobowicz
New York, New York

Adam lives in New Jersey and is a professional specializing in business development.

How are you involved in the bleeding disorders community?

I am just beginning to get involved. It started off with being invited by NHF board member Gary Farro to a wonderful networking event in New York City. The event provided me a brief education on what hemophilia is and how young children, specifically, are affected by it on a daily basis.

What inspired you to get involved?

Being the father of a beautiful 17-month-old baby girl changed a lot of things for me and made me realize how fortunate my family is. I just want to make a positive impact with an organization that reaches so many people.

How do you plan to continue your involvement?

I have decided to volunteer for NHF and try to bring more awareness to my inner circle of what bleeding disorders are and how individuals are affected.

Why is it important for people like you to get involved?

I think people don’t realize what a great feeling it is to be able to help others, whether

it is through a donation of money or volunteering your time. Helping others is an amazing feeling, and the experience should be shared.

Jonathan Taylor
Boston, Massachusetts

Jonathan lives in Boston and is a senior financial adviser for Mayflower Advisors LLC.

What inspired you to get involved in the bleeding disorders community?

I am the financial adviser for Bill McCartney, who is a board member of the New England Hemophilia Association (NEHA). I got involved a few years ago when I was talking with Bill about planning an event in Boston to bring people together to network, have fun and create awareness for a cause close to his heart. When Bill shared that his father had hemophilia and how much NEHA means to him, I knew I wanted to help out and bring a whole new crowd to the association. It was my way of giving back to him for supporting me early on in my career. Since then, I’ve become more involved by connecting new faces to the association and attending more NEHA events. I am proud to now call many people in the New England bleeding disorders community my friends.

How do you plan to continue your involvement?

A few others close to the organization and I recently planned our Third Annual Casino Night fundraiser for NEHA. The event has grown each year and raised over $15,000 for NEHA’s

programs and services. In addition, this year I participated in the NEHA Annual Golf Tournament that has been happening for 28 years by organizing a couple of foursomes.

Why is it important for people like you to get involved?

I am able to bring to NEHA a new community of people that knows little about the organization and what it does. I am proud to have created an “event brand” that will continue to attract local businesses and young entrepreneurs interested in coming together to have fun, raise crucial funds and learn about a new cause. Everyone has always shared in the days after the Casino Night that they thought it was one of the most enjoyable and meaningful nights they attended. I am proud to be part of NEHA’s “Wicked Strong Family.”

Brennan Rose, Ragen Rose-Ortland and Mike Rose, owners of Mike’s Auto Body
Northern California

Mike’s Auto Body’s 18th Annual Benevolence Program was held December 12 at the company’s Auto Damage Assessment Center in Antioch, California.

How are you involved in the bleeding disorders community?

From the inception of our company, Mike’s Auto Body, we have believed it is important to give back and support the communities we live in. We like to say that being involved and helping where we can is in our DNA.

For 18 years, we’ve run our Benevolence Program, which presents refurbished “new” used cars to deserving individuals or nonprofit organizations during the holiday season. For the third year in a row, Mike’s Auto Body has partnered with the Hemophilia Foundation of Northern California. Our 18th Annual Benevolence Program was held on December 12, 2018. We see this partnership continuing for the foreseeable future.

What inspired you to get involved?

The inspiration was Pete Barbounis, a board member of the Northern California Hemophilia Foundation. To see his dedication, to experience his passion and to learn how individuals and whole families are impacted by bleeding disorders became a guiding light to us. If any group would know people to whom a vehicle would make a huge difference in their lives—enabling them to get to the doctor, the hospital, the pharmacy—it was the Northern California Hemophilia Foundation.

Meeting the entire Northern California Hemophilia Foundation team just added more fuel to our fire. Their dedication and enthusiasm were obvious and something Mike’s Auto Body wants to support. Our business is about fixing cars to help people, and it is an honor to partner with the Northern California Hemophilia Foundation to help people.

Ryan Kadri
New York, New York

Ryan lives in Connecticut and is a human capital management consultant at Paylocity.

What inspired you to get involved in the bleeding disorders community?

I have only recently become involved. I was brought to an information meeting to learn more about NHF and its mission. Meeting Val Bias and hearing his story was inspiring. It really opened my eyes to the bleeding disorders community and what NHF does to better people’s lives. I wanted to contribute to ensure people, especially children, benefit from my support. NHF and the chapters do such an amazing job supporting children in the community. I remember attending various summer camps, and that’s something that shaped who I am today. Summer camp created lasting memories for me as a child, and I can only imagine how important that is to a youngster with a bleeding disorder.

Why is it important for people like you to get involved?

I see my biggest contribution, and the contributions from others like me, as bringing awareness and support from outside the community. It is important to participate in efforts that impact someone you don’t know directly. Too often people only empathize with others who have a chronic illness when they see the direct effects on someone they care for. This world would be a much better place if we cared for and empathized with strangers as readily as loved ones.

I realize that by supporting causes and organizations like NHF and the bleeding disorders community, my impact will go further. Being a father of twin girls, I want to set an example of being a global citizen and making a difference in any way that I can.