HFM’s annual consumer education conference for individuals in Michigan’s bleeding disorders community.
Waitlist and Day ONLY Registration is Open
full registration closed on april 2, 2019
HFM would like to thank our fundraising event participants, donors, and sponsors for helping us to keep costs low for our SpringFest attendees. True costs for a family of four, for two nights, include, but are not limited to: Room: $320; Food: $750; Childcare: $130, equaling $1,200. Thank you, again!
HFM’s goal is to provide the SpringFest experience to as many community members as possible. Assistance is available.
For help with financial assistance question and registration, contact Ashley Fritsch at 734.544.0015
For help with transportation assistance, contact Lisa Clothier at 734.961.3512
We’re excited to provide SpringFest attendees with an interactive app. We’re certain you’ll love being able to access up-to-the-minute schedule changes, find event locations, fill out evaluations, and connect with friends by posting on the picture wall. Once your SpringFest registration is complete, you’ll be eligible to receive the app download, with directions via email on Friday April 19.
BSN, RN, REGIONAL CORE CENTER SPECIALIST, HFM
MSSW, APSW, DIRECTOR OF PAYER RELATIONS, HEMOPHILIA ALLIANCE
Jeff Amond started his career in hemophilia in 2004 when he was hired as the Psychosocial Specialist for the American Red Cross Badger Center for Bleeding Disorders. In November 2005, the program and its staff became employees of the University of Wisconsin Hospital & Clinics (UWHC). Jeff was the program’s Clinical Social Worker, also responsible for overseeing most aspects of their 340B Program insurance and reimbursement activities. Jeff was the primary contact for insurance companies and worked very closely with patients on their health insurance needs and issues. He worked closely with the University of Wisconsin Health System’s payer contracting team and brings the experience of working for a HTC located in a large institution. Jeff received his Bachelor’s Degree in Social Work from the University of Wisconsin La Crosse in 1996 and his Master’s Degree in Social Work from the University of Wisconsin Madison in 2001.
DIRECTOR OF INNOVATION, BELIEVE LIMITED
Amy spent seven years as the executive director of the Colorado Chapter of the National Hemophilia Foundation before joining Believe Limited as the Director of Innovation in 2019. She has a background in non-profit management, program development, and theatre. She is currently the host of the Ask the Expert podcast through BloodStream Media, sits on the advisory board for Colorado’s insurance marketplace, and enjoys being an advocate for the bleeding disorder community. Amy lives in Colorado with her dog.
MD, DIRECTOR ADULT COAGULATION DISORDERS PROGRAM, MICHIGAN MEDICINE
Dr. Bockenstedt earned a BA in Chemistry from Wellesley in 1974, and graduated MD Cum Laude from the Harvard-MIT Program in Health Sciences and Technology in 1978. She performed her Residency and Hematology Fellowship at Brigham and Women’s Hospital in Boston. She has been Assistant and then Associate Professor of Medicine at the University of Michigan/Michigan Medicine since 1985 with focus on coagulation disorders and general hematology.
LEAD PRODUCER, BELIEVE LIMITED
As lead producer at Believe Limited, Rob has helmed productions on all seven continents, produced and shot the feature documentary Bombardier Blood (2018), co-produced the feature documentary My Beautiful Stutter (2018), produced and starred in the narrative drama Elsewhere (2018), as well as produced and shot in five developing world countries for the ongoing web docuseries Treatment For All, profiling World Federation of Hemophilia’s Humanitarian Aid Program. Rob also manages the Teen Impact Awards, now in its fifth year, and produces, directs and writes for Believe’s hit bleeding-disorder web series, Stop The Bleeding!.
Samantha A. Carlson
LMSW, DIRECTOR OF AREA AGENCY ON AGING
Samantha Carlson, LMSW, OSW-C, ACHP-SW, received her undergraduate and graduate degrees in clinical social work at Western Michigan University, practicing in West Michigan since 1998. Samantha is currently the Director of the Area Agency on Aging 3A through the Kalamazoo County Health & Community Services Department. Programming includes Choices for Independence case management, Information & Assistance, Long Term Care Ombudsman Programming, Health Living Programming (Creating Confident Caregivers, Personal Action Toward Health, and Matter of Balance). Her clinical and administrative practices focus on brief integrative therapy, family and patient goals; and patient centered care, empowering patients to participate in their healthcare and wellness. Certified in clinical oncology social work and palliative care, she has spoken locally, regionally, and nationally regarding palliative care, psychosocial impact of cancer and blood disorders, volunteer management and ethics, cancer survivorship and pain management.
MaryJane (Missy) Frey
RN, BSN, CPN, MIDWEST HEMOPHILIA NURSE ADVISOR, CVS HEALTH
Ms. Frey (also known as Missy) has been the CVS Health Midwest Hemophilia Nurse Advisor since June 2018. Previously, she was the Hemostasis/Thrombosis Coordinator at the Jeanne M. Lusher Center for Pediatric Hemostasis and Thrombosis at the Children’s Hospital of Michigan (CHM), Detroit. She has been involved with the bleeding disorder community initially from 1982-1990 and in her last Hematology position at CHM since 2003 before changing to CVS Health. She is also very active in the local camp for bleeding disorder patients. Ms. Frey is licensed as a registered nurse in Michigan and currently has a Hemostasis Nursing and Pediatric Nursing Certification and formerly was certified as a Hemopoetic Transplant Coordinator (bone marrow transplant). She received her Bachelor of Science, Nursing degree from the University of Detroit, Mercy, in Detroit Michigan.
MEd, PATIENT RELATIONSHIP AND ADVOCACY MANAGER, SANOFI GENZYME
Shelley Gerson, MEd is a Patient Relationship and Advocacy Manager for Sanofi Genzyme. Shelley is responsible for patient and caregiver engagement in Michigan and Indiana. Shelley has severe Hemophilia A and had a father and brother, both with severe Hemophilia A. She grew up going to the first camp in the world for people with hemophilia and eventually served in almost every role at Camp Bold Eagle. Shelley also served on the Board of Directors of HFM for nine years, four of which she served as the Chairperson of the board.
Jennifer H. Haywood
Jennifer H. Haywood, LISW-S, LICDC-CS has been a social worker and addictions specialist since 1996 when she received her MSW from The Ohio State University and her chemical dependency license from the State of Ohio as she completed her internship at an addiction recovery center. She has been working in the field of mental health and addictions for over 22 years, and has been training professionals since 1998 in the areas of mental health, diagnosis, supervision, ethics, addictions and motivational interviewing. She has been teaching at The Ohio State University in the social work program since 2003 and currently holds a full time lecturer position. She currently trains, teaches and has a private practice where she sees about 15 clients a week. She consults with companies on addiction and currently has a supervision group in her practice. She also clinically supervises a group of recent MSW graduates for their independent licenses.
PT, MS, HEMOPHILIA TREATMENT CENTER, UNIVERSITY OF MICHIGAN
Sherry Herman-Hilker, PT, MS is a physical therapist at the University of Michigan Hemophilia Treatment Center and the Pediatric Rehabilitation Center. She has taken care of patients in the bleeding disorders community for more than 20 of her 29 years of practice. Sherry is passionate about helping people feel their best. She has recently developed an interest in yoga and the possibilities this practice offers to people with bleeding disorders.
MA, HIGH SCHOOL COUNSELOR & TEEN WORKSHOP LEADER
Shellye Horowitz, MA has been in the field of education for over 25 years. During her career she has worked as a principal and as a school counselor at every level from preschool through high school. Shellye has strong ties to the bleeding disorders community with five traceable generations of hemophilia in her family.
LMSW, ACSW, HENRY FORD HEMOPHILIA TREATMENT CENTER
Ellen Kachalsky received her MSW from Adelphi University in New York and has been the Hemophilia Social Worker at Henry Ford Hospital in Detroit for the past 21 years. She also works in Hematology-Oncology, having come to Henry Ford with many years of experience in Oncology. She enjoys working directly with her clients, in addition to advocating for them and attempting to ensure their understanding of insurance, work and careers, and other issues that impact their lives. Ms. Kachalsky has been involved in research projects on patients’ perception of acute and chronic pain, together with her HTC and the Northern Michigan Bleeding Disorder center in Traverse City, MI, and she did a small survey of HTC Social Workers support and supervision in 2014, which was presented as a poster at the WFH meeting in Australia. She was selected for NHF’s Social Work Excellence award in 2015. In 2016 she collaborated with other HTC Social Worker regarding the SW roles in HTCs in the United States, and 3 posters from this survey were displayed at the WFH meeting in Orlando in 2016.
BSN, RN, TAKEDA
Sue Kovats-Bell, BSN, RN, has worked as a Senior Clinical Specialist for Takeda US Hematology, formerly Shire, for the past 6 years. She is a diploma graduate of the Bronson Methodist Hospital School of Nursing and received her baccalaureate degree in nursing from the University of Michigan. Prior to her Senior Clinical Specialist role, Sue worked with patients and families with bleeding disorders for over 18 years as the Nurse Coordinator for both the Pediatric and Adult Hemophilia Clinics in Kalamazoo, MI. In addition to her hemophilia nursing experience, Sue previously worked in the areas of nursing management, professional staff recruitment, nursing staff development and education, and as a medical/surgical staff nurse. Sue has taught numerous workshops and has facilitated a wide variety of interactive learning sessions. She currently resides in Portage, Michigan.
Susan Fenters Lerch
HFM EXECUTIVE DIRECTOR; FEDERAL GREAT LAKES REGION V-E HTC NETWORK DIRECTOR
Susan Fenters Lerch is an accomplished leader who has served in the non-profit sector for more than three decades. Sue joined HFM as the Executive Director in June 2014; however she came to this role having previously served as the HFM Associate Director from 1983-1996. In 1997 Sue joined Make-A-Wish Foundation of Michigan as President and CEO until 2010 when she launched Autism Alliance of Michigan. Additionally, Sue has served as the lead consultant in implementing World AIDS Day Detroit, initiated the Hospice of Michigan Foundation and created Bring Joy consulting services. Currently, as the Executive Director at HFM, Susan is responsible for statewide patient educational programming and advocacy services and also serves as the Great Lakes and Region V-East Hemophilia Treatment Centers’ Regional Director.
MEd, BSN, RN, TAKEDA
John Martinez has served the chronic condition and rare disease community since 2012, providing education and support to all patients and caregivers. John currently serves as a health educator at Takeda (formerly Shire) and is responsible for conducting outreach and educational programs for territory spanning from Michigan to Louisiana. He delivers support to patients & caregivers by providing bilingual health education, including planning and implementing education seminars & training programs tailored for English & Spanish-speaking bleeding disorder community.
Digital Marketing Lead, Ford Motor Company | HFM Board President
Jim is a Digital Marketing Lead at Ford Motor Company, responsible for optimizing all media efforts, and cascading those learnings throughout the entire organization. He started his career with aspirations to be a radio host. While he achieved this, his on-air talent was never as great as his ambition and drive. He quickly realized he was much better suited leading the marketing departments of these radio stations, than being the on-air host. In 18 years he’s been fortunate enough to work on brands like Ford Motor Company, Six Flags, American Express, 20th Century Fox, American Family Insurance, and ALDI. His experience includes developing digital programs from vehicle launches, Super Bowls, and web series (remember when those were really innovative?). Jim is a graduate of Wayne State University earning a Bachelor of Science in Marketing Management from the School of Business Administration.
PhD, THE UNIVERSITY OF PENNSYLVANIA POSITIVE PSYCHOLOGY CENTER
Shannon Paoletti has over 20 years of experience in organizational development and training in the federal, state, and local sectors, nonprofit, private industry, and higher education. She has worked with the University of Pennsylvania Positive Psychology Center for 18 years as a lead instructor on resilience and positive psychology topics. This work has included delivering programs to the United States Department of Education, Office of Rehabilitation Services Administration, educational institutions in the United States, United Kingdom and Australia, community mental health programs, and the United States Army. Shannon has instructed masters and doctoral coursework at The George Washington University in the department of Counseling, Human and Organizational Studies. She provided research for the book Diagnosis and Treatment Planning in Counseling and coauthored Chapter 10, Counseling for Career and Organizational Development. She also has served on the faculty at the Brookings Institute where she designed and delivered training programs for the Women in Leadership program, the National Institute of Health Leadership Lens program, and the Executive Leadership program for federal executives. Shannon earned her Ph.D. in Counseling and Organizational Psychology from The George Washington University, her M.A. in Developmental Psychology from Boston College, and her B.A. in Psychology and Sociology from The George Washington University.
LMSW, CHILDREN’S HOSPITAL DETROIT
Annie Phillips, LMSW, has an undergraduate degree in Psychology from DePaul University and completed her Master’s degree in Social Work at the University of Michigan in December of 2014. While at the University of Michigan, Annie completed her 12 month internship at The Children’s Hospital of Michigan in Detroit in Pediatric Oncology. Annie currently works in The Children’s Hospital Hemophilia Treatment Center (HTC) in the Hematology/ Oncology Clinic as the hemophilia and bleeding disorders social worker. Annie’s job at the HTC is to provide psychosocial support to patients and families who have chronic bleeding disorders. Annie does this by using therapeutic interventions, providing resources, running support groups and many other responsibilities to ensure that all the patient’s psychosocial needs are being met.
MD, HEMOPHILIA TREATMENT CENTER, UNIVERSITY OF MICHIGAN
Dr Steven Pipe is a Professor and the Laurence A. Boxer Research Professor of Pediatrics and Professor of Pathology at the University of Michigan, Ann Arbor, Michigan, USA. He is the medical director of the Pediatric Hemophilia and Coagulation Disorders Program and medical director of the Special Coagulation Laboratory. His clinical interests include bleeding and thrombotic disorders and congenital vascular anomalies. Dr Pipe also directs a basic research lab investigating coagulation factor VIII and the molecular mechanisms of hemophilia A. He has been actively involved in clinical trials with novel therapeutics for hemophilia including gene therapy. He was the 2015 recipient of the Leadership in Research Award from the National Hemophilia Foundation. He has served on the Board of Directors for the Hemostasis and Thrombosis Research Society, as Chair of the Board of Directors for the American Thrombosis and Hemostasis Network and currently the Chair of the Medical and Scientific Advisory Committee to the National Hemophilia Foundation.
CERTIFIED YOGA TEACHER, TINY BUDDHA YOGA / ADVOCACY & COMMUNICATIONS MANAGER, HFM
Sarah Procario, CYT 200, graduated from the University of Pittsburgh in 2014 and shortly after began working as the Advocacy and Communications Manager at HFM. In 2018, Sarah completed her 200-hour yoga teacher training at Tiny Buddha Yoga in Ann Arbor, MI, where she currently teaches vinyasa yoga classes. Last year, in collaboration with the University of Michigan, she worked to develop a specialized yoga program for women with bleeding disorders.
MD, DIRECTOR OF THE BRESLIN CANCER CENTER, ADULT HEMATOLOGIST AT MSU CENTER FOR BLEEDING AND CLOTTING DISORDERS
Dr. Jatin Rana is a hematologist and medical oncologist practicing at the Michigan State University Breslin Cancer Center. He received his medical degree from the Wayne State University School of Medicine, and he stayed in Detroit to complete his Internal Medicine Residency at Henry Ford Hospital. He graduated from the hematology/oncology fellowship at Oakland University William Beaumont Hospital in Royal Oak, MI before joining as faculty at Michigan State University. Dr. Rana serves as the adult hematologist for MSU’s Comprehensive Bleeding and Clotting Disorder clinic for the region’s hemophiliac population and as the medical director of the Breslin Cancer Center.
LMSW, NORTHERN REGIONAL BLEEDING DISORDER CENTER, MUNSON MEDICAL CENTER
David Rushlow is a licensed master social worker and has been at the Northern Regional Bleeding Disorder Center at Munson Medical Center in Traverse City since 1993. He has years of experience working with mental health issues and has had a part time private practice sine 1995 where he specializes in the treatment of depression and anxiety disorders. Additionally, David has experience working with HIV, Diabetes, Trauma, and a wide variety of chronic health conditions.
TAI CHI INSTRUCTOR
Rick Starks was a paramedic and crew captain of an ambulance squad for 20 years. A lifelong martial artist, with over 40 years experience, originally studying Kung Fu under Al Dacascos, who later moved to Germany, Rick studied various other styles and became a black belt in Tae Kwon Do. He was the 1987 Colorado State Champion, gold medal in sparring, silver in poomse (forms) and gold in breaking. Numerous injuries and later bilateral hip replacements led to his transition to Tai Chi. He is a senior student and instructor under David-Dorian Ross, the 8 time national champion and world medalist in Tai Chi. As a severe hemophiliac, Rick travels nationally, teaching and leading sessions in Tai Chi, specifically in the hemophilia and bleeding disorders community. He also speaks passionately on the benefits of mindfulness and meditation in pain management.
Spending nearly 20 years working in the Bleeding Disorders industry, Laureen has galvanized a passion for this community. That, coupled with a thirst for science, led Laureen to her current position of Senior Patient Education Liaison at Spark Therapeutics. “I believe that everyone may at some time in their lives look to gene therapy for themselves, a friend, or a loved one for any number of genetic disease areas.” With that in mind Laureen has made it her mission to break down and explain the complicated science behind gene therapy. “We owe it to help everyone to fully understand what gene therapy is meant to do.”
GUTMONKEY, FOUNDER, CEO, & BIG DOG
Bio to come.