We are excited to introduce our second 'Featured Woman'- Ashley Long! We salute her outstanding commitment to the bleeding disorders community. We asked Ashley a series of questions about herself and her amazing story. Please read to find out more!
1. Where are you from?
Buffalo, New York
2. What bleeding disorder do you have and when were you first diagnosed?
I am a symptomatic carrier of severe Hemophilia A. I was diagnosed at birth.
3. When and how did you first get involved in the bleeding disorder community?
This community has actually played a major role in my life for as long as I can remember. Growing up I always admired my father who is the President of the Board of Directors for the Hemophilia Center of Western New York. From a very young age I knew that I wanted to be involved within this community whether it be on a local or a national level, or both. In 2014 I was accepted into the National Youth Leadership Institute and that truly is how I initially became involved in the community. From my involvement in NYLI, I knew that, like my father, I also wanted to be involved on a local level. In 2015 I was voted onto the Board of Directors for the Hemophilia Center of Western New York.
4. What has kept you involved to this day?
Many things have kept me involved to this day. The people I have met in the community have had a major impact as to why I stay as involved as I do. I have met some of the most inspirational people with the most incredible stories about resilience and staying positive despite obstacles that have happened to them. Each person I meet inspires me more and more to be active in this community. My father has severe Hemophilia A and he’s a big a reason I stay as involved as I do. His strength inspires me everyday and makes me want to make a positive impact within the bleeding disorders community. Growing up I always loved the quote “Be the change you wish to see in the world” and for me I hope to have a positive impact through my work within the bleeding disorders community,
5. When and how did you first get involved in NHF?
I first became involved with NHF in 2014 when I was accepted into the National Youth Leadership Institute. From my involvement within NYLI I also have served on the Annual Meeting Planning Committee for the 2016 Annual Meeting in Orlando and for the 2017 Annual Meeting in Chicago. I also have had the privilege of serving on the Victory for Women Taskforce and being the paddle pledge speaker at NHF’s 2016 Spring Soiree.
6. What is one thing people don’t know about you?
One thing people do not know about me is that I love cooking and baking.
7. What is one thing you wish for the women with bleeding disorders community?
One thing I wish for women in the bleeding disorders community is advancement in treatment and quality of care and for all women to know the importance of being your own advocate.
8. What is one piece of advice you would give a woman who was newly diagnosed with a bleeding disorder?
One piece of advice I have is not to look at your diagnosis as a completely negative thing and instead focus on the positives, become knowledgeable about your disorder and learn to be your own advocate.