PrintFriendly

Print Friendly, PDF & Email

Members & Mission Statement

Mission

The mission of the Ethics Working Group is to promote integrity and ethical behavior in the bleeding disorders community.

 

Goals of the Ethics Working Group

  1. Promote transparency in decision making
  2. Encourage collaborative discussions involving diverse perspectives
  3. Clarify ethical standards to address ethical conflicts

 

Objectives of the Ethics Working Group

  1. Provide education, research, and guidance on relevant ethical issues

Members - A Multi-Disciplinary Working Group of NHF

  • Consumer Rep. (Parent/Person with a bleeding disorder) - Kevin O’Connor
  • Consumer Rep. (Parent/Person with a bleeding disorder) - Skye Peltier, MPH, PA-C
  • Community Rep. (Non-Bleeding Disorder) - Stephen W. Jones, MS, ACC
  • NHF Board of Directors Rep./MASAC Member (Co-Chair) - Kristie Ostash, MD
  • MASAC Rep. - Tyler Buckner, MD, MSc
  • Nursing Rep. - James Munn, RN, MS
  • Social Work Rep. (Co-Chair) - William Berger, MS, MSW
  • NYLI Rep.
  • Consumer Youth Rep.

Kevin O'Connor was born in Brooklyn NY and grew up and educated in various parts of NYC. 
US Marine Corps ’67 – ’70, Vietnam 19 months
BS in Marketing, Fordham Univ. ’71, MA Philosophy, Fordham ‘78 with emphasis and Thesis in Business and Medical Ethics. 
Worked as a pharmaceutical rep in NYC 10 years, Pharmaceutical Manager 12 years NJ & PA , Pharmaceutical Manager 8 yrs VA & NC. Retired in 2002. 
Then worked as the Executive Director of a Free Clinic in Virginia. 
Hemophilia relationship began when I married in 1987 and stepson (7 years old) had Factor 8 severe. Pharmaceutical, clinic and military background made me comfortable with medical issues and the bureaucracy of health insurance and medical practices. 
I was active in the NJ Hem Assoc. and then the VA Hem Fdn where I was chapter President, newsletter editor, fund raiser etc. I also filled in as Executive Dir. during transition and growth (and also during E.D. maternity leave) 
(President & Board Member of two other non-profits in the past) 
Legislatively active as the Free Clinic ED and with the VHF chapter on both the state and national level. 
I have initiated, organized and directed about 20 fund raising events including community running events and golf tournaments for the VHF. 
Member of the EWG about 2 years.

Skye Peltier, MPH, PA-C is a Physician Assistant who has been involved in hemophilia care since 2005. She currently works at the University of Minnesota and Children’s Hospitals and Clinics of Minnesota. She has been going to bleeding disorders camp since childhood as a young woman with a bleeding disorder and has a passion for helping young people learn self-reliance and resilience. She earned an MPH in Community Health Education from the University of Minnesota in 1999 and worked as a health educator before going to PA school. She enjoys traveling and has done medical volunteer work in Mexico and China.

Kristie Ostash, MD received her medical degree from the University of Arizona. She completed her pediatric training and fellowship in Pediatric Behavior & Development/Child Abuse at Children's Hospital Los Angeles (CHLA). After her training, she accepted a position as an Assistant Professor of Clinical Pediatrics at the USC Keck School of Medicine and was on staff as an Attending Physician within the Division of General Pediatrics at Children’s Hospital LosAngeles.  In addition, Dr. Ostash served on the Child Abuse Identification Team and hospital ethics committee at CHLA. After multiple years of having bleeding and bruising issues, and being told everything is “normal”, Kristie was finally diagnosed with mild Hemophilia A.  The frustration of not having a diagnosis for years, drove her to become an advocate for people with bleeding disorders. In 2012, she was elected to the National Hemophilia Foundation’s Board of Directors, is a member of NHF’s MASAC and co-chairs the NHF’s Ethics Working Group.

Tyler Buckner, MD, MSc is a hematologist at the University of Colorado – Denver. In addition to providing care to individuals with bleeding and clotting disorders in the HTC, Dr. Buckner enjoys interacting with the community through bleeding disorders camp, outreach clinics, educational conferences, the annual NHF walk, and other activities. Tyler completed his training in adult and
pediatric hematology at the University of North Carolina, where he also earned a Masters degree in clinical research. His research focuses on assessment and management of pain in individuals with bleeding disorders.

William “Bill” Berger, MS, MSW is currently a Social Worker and Bleeding Disorder Program Coordinator at Washington University in St. Louis, MO.  He has been actively involved in the local, regional and national bleeding disorders community for nearly 25 years and is a member of the Social Work and Ethics Working Groups of NHF.

 

Past Members and Possible Resources

Social Work

  • Sabrina Farina
  • Nancy G. Hatcher
  • Polly Partin-Welch
  • Dawn von Mayrhauser

Youth Consumer

  • Michael Drab

Nursing

  • Jocelyn Bessette Gorlin

Consumer

  • Michael Cole

Board

  • Clifford B. Cohn

MASAC

  • Donna DiMichelle

Ethicist

  • Chris Feudtner
  • Arthur Caplan, PhD