Darlene Shelton – President/Founder – {Missouri}
Professional Experience: Owner, Business Advantages – Business and Accounting Consulting
Personal Experience: Grandson with severe hemophilia and 2 granddaughters with moderate/mild
Member: Missouri EMS for Children Board, National Association of EMTs (NAEMT) & EMS for Children
Pediatric Pandemic Network (PPN) Home Medical Advisory Committee Member
Years of volunteer leadership and service with churches, youth groups, community & bleeding disorder organizations,
U.S and international missions.
Ashley Gregory – Vice-President – {California}
Professional Experience: Hemophilia Foundation of N. California -Volunteer Coordinator & Female Factor Chair,
Fair Time For Women Director, Rare Patient Voice – Patient Advocate,
Treatment Innovations – Peer Seeking Safety Facilitator
Personal Experience: Patient and parent of children with severe hemophilia, hyper-mobile Ehlers-Danlos syndrome,
primary adrenal insufficiency, hypothyroidism, ulcerative colitis, PTSD, traumatic brain injury, scoliosis and extreme urticarial
Hemophilia Federation of America – Executive Board Member and Committee Member;
Hemophilia Council of California – Advocacy Committee; Santa Cruz City Schools Health Clerk;
Central California Alliance for Health – Advisory Board; Whole Child Model Advisory Board
Tammy Jones – Secretary – {Arkansas}
Professional Experience: Arkansas RAN Ambassador for NORD,
Personal Experience: One of Five Vwd Bleeding Disorder Patients in her immediate family and caregiver to a Type 1 Diabetic.
Community Advocate for 17 years, NHF Planning Committee, Victory for Women Task Force
Panelist Speaker for VWD Families in Texas & Tennessee, Texas Women’s Retreat Planning Committee- 9 years,
Past NHF Chapter Board President and Treasurer
Brandon Shelton – Treasurer – {Missouri}
Professional Experience: BA – Business Management; Project Manager, Rick Shipman Construction, Inc.
Personal Experience: Uncle to a nephew and 2 nieces with Hemophilia.
Years of volunteer experience with youth groups and international missions
Daniel Shelton – {South Carolina}
Professional Experience: Mining Engineer – Senior Mine Planner, Haile Mining Corporation
Personal Experience: Husband to and father of three hemophiliacs plus one unaffected child.
Previous Director of the Gateway Hemophilia Chapter teen program and active in a variety of fraternity
volunteer programs during college.
Andrea Nelson – {Minnesota}
Professional Experience: BA – Sociology: Emphasis in Family, Health & Aging; Minor: Gerontology.
Certified Massage Therapist, Certified Home Management Provider, & Financial Associate
Personal Experience: Adrenal Insufficiency (Congenital Adrenal Hyperplasia -CAH); Wife and mother to 2 boys;
Rare Disease Advocate and Volunteer for 12 Years – helped with development and passing of the State EMS Treatment Bill {SF153-2019} plus family outreach and advocacy in DC
Yehuda Gelman – {New York}
Professional Experience: Executive Director – Highway of Hope
Personal Experience: Hydrocephalus and Cerebral Palsy.
Rare Disease Advocate has worked with No Barriers, NORD, The EveryLife Foundation,
Oscar Mike the Cerebral Palsy Foundation and others; previous New York EMT.
Marni Cartelli – {New York}
Professional Experience: Retired Certified Surgical Scrub
Personal Experience: Complex Regional Pain Syndrome (CRPS)
Rare Disease & Chronic Illness Advocate and Volunteer for several years with prior Board and Committee experience; Speaker and Writer
Brian O’Conner – {Arkansas}
Professional Experience: EMT-Paramedic; Special Operations Response Team,
Protocol Review Committee, Research and Professional Development
Personal Experience: Stroke, PFO closure, cognitive impairment, PTSD.
Daughter diagnosed with microcephaly with Neuronal migration anomalies causing; cognitive, speech, and physical impairment; Epilepsy, and startle-provoked epilepsy.
Latasha Holt – {Louisiana}
Professional Experience: Ph.D.-Professor in Educational Curriculum & Instruction: Emphasis in reading, special education,
and ESL; 17 years of teaching experience in K-12 and higher education.
Author of Revisiting John Dewey: Applying What He Said 100 Years Ago to Today’s Need
Personal Experience: Adrenal Insufficiency and Epilepsy
Mom of three children-one with adrenal insufficiency and epilepsy; advocate for the whole child; researcher and write