A Look at the NATIONAL HEMOPHILIA FOUNDATION’S latest project with ALIANA SOTO
By Meaghan Coffey
The first homework assignment of my eighth grade health education class was detailed on a clean sheet of paper, blank save for the words “Who is Ryan White?” Wikipedia was just getting started, but lucky for us studious kids, the corresponding page after typing that question into Google was well-stocked.
I see now what my teacher was doing. She guilefully sandwiched together three topics in one lesson–homophobia, HIV/AIDS, and hereditary genetic disorders–by discussing Ryan White. He was a hemophiliac born in 1971 who contracted HIV from contaminated blood in one of his weekly transfusions at age thirteen. In his short life, he managed to not only raise awareness for hemophilia, but fight the quickly emerging wave of ignorance and stigmas surrounding HIV in the 1980s–the belief that it was exclusive to sexually active gay men or transmittable by anything other than direct contact of infected bodily fluids. Because of Ryan, laws surrounding the regulation of blood donations have increased tenfold, ensuring safe, life-saving transfusions for hemophiliacs today.
It’s appropriate that hemophilia was worked into the public school health program as well, as it deserves attention. Hemophiliacs require expensive treatments to survive–from blood transfusions to emergency medication. Fundraising is crucial, and the National Hemophilia Foundation has stepped in as the lead figure in the service of of those living with this genetic disorder.
NHF has a new groundbreaking program, Connect. To find out more about their efforts, I talked with Aliana Soto, a leading member with inspiring dedication, and a touching personal story as the proud aunt of a hemophiliac.
Meaghan Coffey: How did you become involved with National Hemophilia Foundation?
Aliana Soto: My nephew Jaylen Barter was born with Severe Hemophilia A. Jaylen was born healthy and, after receiving his circumcision, went home with his family. A day later my sister woke up with Jaylen crying and drenched in blood (his clothes, diaper, and bed). She went to the hospital, and they said it was a bad cut, wrapped up his private part and sent them on their way. The following morning the bleeding started again, my sister rushed to the hospital and upon arrival Jaylen was pale. The urologist stitched up his circumcision again and Jaylen was now losing more blood. His hemoglobin levels were very low and he was rushed on oxygen and an IV. That night he was given his first blood transfusion and then another blood transfusion a few hours later. He had to remain in intensive care until he was diagnosed and wasn’t allowed to be touched or held except by his parents and the nurses. Jaylen was diagnosed with Severe Hemophilia A two weeks after the first incident. Jaylen is now three years old and currently receives infusions three times a week at home. His parents are learning to infuse him themselves. My nephew attends a regular daycare, and lives an active life like any regular growing boy. My parents, siblings, and I are very active in raising my nephew and in raising funds for hemophilia.
Inspired by Jaylen, I would select NHF for my company match program every year. This past summer my younger sister had an internship with Bayer in their Global Marketing group for the Kogenat (a Hemophilia product) and, as part of her internship, she visited NHF. During her visit to NHF, Cheryl [Baun, Director of Institutional Advancement] noticed my sister’s last name and asked if she knew me, and explained to my sister that they get a matching gift on my behalf from my employer but they didn’t have any contact information for me. My sister gave Cheryl my contact information and she reached out, and there you go!
MC: NFH recently launched Connect, a young professionals group, which contributes to bringing a younger demographic to the cause. What role do you play in that mission?
AS: I have been involved in the building of other young professional networks, so I know firsthand the value young professionals bring to the table. NHF is personal to me, so it’s not just something on my resume; I have a direct interest in seeing Connect succeed. The bleeding disorder community is very small so Connect will be able to bring the message of NHF to the masses to raise awareness, bring in some potential resources and fundraise. The opportunities we offer are endless.
MC: As a Connect member, you were one of the co-chairs for NHF’s Spring Soiree. Would you say the event was a success?
AS: I think the event was a great success. We had a great mix of people; everyone got some great entertainment, good food, good drinks, and some amazing networking. Not to mention, everyone looked fabulous. What more could you ask for?
MC: What’s coming up next for NHF and Connect?
AS: Connect is looking to do some groundwork to build up our network. Additionally, we are looking to do some service opportunities directly with NHF, and lastly, doing some of our own fundraising to not only raise funds but to share the mission of Connect and NHF.
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. Years ago, Patrick McMullan’s sister died of hemophilia-related causes, and thus this issue holds a special place in his heart. It remains one of Patrick McMullan’s most cherished charity causes.
Aliana Soto interviewed by Meaghan Coffey
Written and Edited by Meaghan Coffey
Photography Courtesy of Aliana Soto
Design by Marie Havens
Photography Courtesy of Aliana Soto