Hemophilia Association of the Capital Area

Board of Directors

2018-2019 HACA Board of Directors

Dana Brayshaw
Name: Dana Brayshaw
Board Position: President
Board member, 2013-2017, 2018
Connection to the community: Hemophilia B
Professional information: Business Development Manager at Signature Financial Partners, LLC.
I've been involved with the hemophilia community for a large portion of my life. I served on the HACA board as secretary from 2013-2017 and was HACA's representative on the HFA Board of Directors from 2015-2018. I hope to encourage advocacy within the organization, and work for access to higher quality healthcare as well as affordable treatment.

 
Stephanie Phillips
Name: Stephanie Phillips
Board Position: Vice President
Board member since 2015
Connection to the community: I'm a hemophilia A carrier and an advocate for the bleeding disorder community. My father, Stephen Kulenguski, was also a dedicated supporter and member of the Washington, DC, hemophilia community, lived with severe hemophilia until he passed away more than 10 years ago. In 2015, my sister and I co-chaired the National Hemophilia Walk in D.C. in honor of our father.
Professional information: I have worked for Global Business Travel Association for the past five years as a Senior Marketing Manager for the production team. I manage both in-office and overseas staff. I've worked in marketing/communications and event planning throughout my career.
After chairing the National Hemophilia Walk, I wanted to stay involved. I have worked in both fundraising and event management and hope to help with HACA's events.

 
Chrissy Burbank
Name: Chrissy Burbank
Board Position: Secretary
Board member since 2017
Connection to the community: Carrier of hemophilia A
Professional information: Training Manager for USAID's Global Health and Supply Chain program with Chemonics International.
As the daughter of a severe hemophiliac and a carrier of hemophilia A, bleeding disorders have been a part of my life since I was young. Both of my parents were active members of HACA and I have since become an advocate for improved access and delivery of health services for people bleeding disorders in my community.

 
Sandesh Mohan
Name: Sandesh Mohan
Board Position: Treasurer
Board member since 2018
Connection to the community: Parent of young man with hemophilia
Professional information: Solutions architect for the US Navy supporting multiple Navy Aegis Programs.
As a parent of a son with hemophilia, I have seen the many epic events thataffectfamilies with hemophilia in their daily and professional life. This has led to understanding new and innovative medical research been conducted worldwide and am always looking forward to seeing what FDA has to offer to the hemophilia community.

 
Mark Antell
Name: Mark Antell
Board member since 2016
Connection to the community: Hemophilia A
Professional information: Retired from the Environmental Protection Agency
I'm one of the few, lucky, hemophilia-affected guys who survived both: a childhood before factor, and, viral contamination of factor.
By 1990, almost everyone with hemophilia had hepatitis C (HCV). I was one of the principals in "People with Bleeding Disorders and HCV," an organization which lobbied to remove institutional barriers to the rapid development and availability of HCV therapy. HACA helped by joining and promoting our Citizen Petition to FDA, a key step! My liver was on the edge of failure when I was cured of HCV. In addition to my HACA work, I also serve on the executive board of the Hemophilia Federation of America.

 
Eena Kapoor
Name: Eena Kapoor
Board member since 2014
Connection to the community: Physical therapist at Children's National Hemophilia Treatment Center
Professional information: Physical therapist for 12 years, working extensively with bleeding disorders, neonatal and pulmonary diagnoses as well as medical volunteering experience in developing countries.
I bring to the board the treatment center perspective, as well as rehabilitative care experience.

 
Artura Jackson
Name: Artura Jackson
Board member since 2018
Connection to the community: von Willebrand disease
Professional information: Employed by the Maryland-National Capital Park and Planning Commission Black History Program and helps manage three historic African-American sites in Prince George's County.
My younger brother and I both have von Willebrand disease type 1. I joined HACA soon after finding out about my diagnosis in 2005. I'm an advocate of education and information for women and girls affected by bleeding disorders. I live and work in Prince George's County and am an alumna of Salisbury University with both a bachelor of arts and master's degree in history.

 

Steve Long
Name: Steve Long
Board member since 2013
Connection to the Community: Hemophilia B
Professional Information: Diagnosed after seven years in the Air Force, I was allowed to stay in and retire after 27.5 years. My career was spent in Intelligence with numerous varied reserve tours over the last 18.5 years. Most of my work was in long range planning and crisis management. Currently, I work as a realtor at Avery-Hess Real Estate and enjoy helping people to find the right place to live.
I have been and remain a very active volunteer in the state and national soccer communities, holding numerous offices and chairing and serving on many committees. I still referee and serve as a delegate at large to the Metro-DC Virginia Soccer Association. From 1986-1990 I was president of the Brookland-Bush Hill Civic Association, serving on the Van Dorn Metro Station development committee.About seven years ago, I became active in the hemophilia community, eventually serving as secretary and then president of HACA. I am now a Member at Large on the HFA Executive Committee. I also represent HACA on the HFA board as well.

 
Robin Monin
Name: Robin Monin
Board member since 2018
Connection to the community: Carrier with two sons that have hemophilia
Professional information: Internal Medicine Veterinary Technician
I amoriginally from upstate New York, and have a brother with severe hemophilia A. My mother, grandmother and I are all carriers. I spent many summers working at the Double H Ranch Camp, a summer camp for kids with medical conditions. I met her husband, Phil, in Texas after college, and we moved to the DC area not long after we were married in 2012. I gave birth to my son, Jack, in November 2015, who has severe hemophilia, and we recently adopted a 2-year-old boy named Luke, who also has severe hemophilia.

 
April Owens
Name: April Owens
Board member since 2016
Connection to community: Industry representative
Professional information: Client Relations Executive, Hemophilia & vWD Specialty Services - CVS Caremark Rx Specialty Services, 10 years
As a board member, I bring my 10 years of industry experience and employer resources. I was a member of the Hemophilia Foundation of Maryland board for nine years.

 
Jennifer Sleboda
Name: Jennifer Sleboda
Board member since 2018
Connection to the community: Hemophilia A
Professional information: I recently left my job of 11 years at an international non-governmental organization (NGO), where I focused on capacity building and training of the staff of NGOs in Africa, Asia, and Latin America that are working on issues of social and economic justice. Currently I'm conducting a job search while doing consulting work in the same field.
I joined the hemophiliacommunity in early 2015 after my son was diagnosed with severe hemophilia A when he was two days old. His diagnosis was a complete shock, and I later found out that I am a carrier (and mild hemophiliac) due to a spontaneous gene mutation. I joined HACA a month after he was born and have been an active member ever since.

 
Michelle Stielper
Name: Michelle Stielper
Board member since 2015
Connection to community: I have been actively involved with the bleeding disorders community for the past 16 years since my younger brother was diagnosed. Since then I have also received a personal diagnosisand have become a mother to an affected son. I have made countless friendships and consider the community an extension of my family.
Professional information: Regional Care Coordinator, Matrix Health Group
My experiences give me a unique perspective! I have been a community member for quite some years. I was an unaffected sibling - or so I thought - for eight years before receiving my carrier status. Then two years later, I was diagnosed as a hemophiliac or "shemophiliac," as I like to say. Then I went on to have my affected son a few months after receiving an official diagnosis. So, I would say that I can sympathize with an unaffected sibling, an affected individual, and as a parent or caretaker. I try to stay well-versed on the latest and greatest to make sure that I can continue to be a resource for our fellow community members in whatever area that help is needed.

 
Kristin Urbahn
Name: Kristin Urbahn
Board member since 2015
Connection to the community: Carrier and parent of a child with severe Hemophilia A
Professional information: Stay-at-home mother
I bring to the board carrier and caregiver experience and perspective.

 
Callie Victor
Name: Callie Victor
Board member since 2018
Connection to the community: I’ve been connected to HACA since I was a young child when my mother served as the executive director and my father as treasurer of the organization. My husband, Joe, has also served as treasurer of the board.
Professional information: Assistant Professor, Division of Occupational Therapy, Shenandoah University.
I recently became a mother to a sweet baby boy and in my spare time enjoys walking my dogs, watching sports, and traveling.


 

 Fundraising Chair: Stephanie Phillips

 Programming Chairs: TBD

 Governance Chair: Stephanie Phillips

Additional representation: Hemophilia Federation of America Board Member: Steven Long

 HACA Board of Directors Meetings