Cyndi is a fundraising consultant and helps nonprofit organizations raise large-scale campaign funds. She also has Gaucher disease and is a life-long patient advocate. Over a 40-year span, she has participated in many clinical trials and research studies to help bring treatments to market. After working for the National Gaucher Foundation for nearly 11 years as a fundraiser and patient advocate and in patient advocacy for a biotech company, she continues to act as a mentor and advocate for Gaucher patients and families and raise awareness by speaking at patient educational events and conferences, Gaucher and rare disease symposiums, and pharmaceutical patient and educational meetings. She has served on multiple boards, committees, and in advisory roles for many rare disease organizations and biotech and pharmaceutical companies. Seeing a need for more patient support and realizing she could do more to help her fellow Gaucher families, she co-founded the Gaucher Community Alliance. Cyndi lives in Sonoma, CA with her husband and cat and loves to hike.
Aviva Rosenberg, JDis the co-founder and co-president of GCA. She is a health care attorney based in Pennsylvania and taught as an adjunct professor at several universities. Aviva was diagnosed with Gaucher disease at age 27, following 20 years of symptoms with no answers. Her son, Eli, also has Type I Gaucher disease. Aviva’s passion is educating about genetic diseases and screenings and talking about her personal journey with Gaucher disease, including the need to shorten patients’ diagnostic results. After yeas of dealing with insurance appeals and learning patients’ struggles with access and coverage, she was motivated to found Gaucher Community Alliance so that patients can share knowledge and experience to help others. She lives with her husband and three fabulous boys in Pittsburgh, Pennsylvania.
Christine White is the President and Executive Director of the National Gaucher Foundation of Canada. Christine along with several other Gaucher families co-founded the organization after successfully lobbying the Canadian government for access to treatment. Christine’s daughters were diagnosed with Type 1 Gaucher disease when they were 1 and 2 years old. Christine is very active in the global Gaucher community and currently holds a seat on the board of directors of the International Gaucher Alliance. Christine has met and spoken to Gaucher patients all over the world and is committed to supporting families living with this condition.
Wayne Rosenfield is a lifelong veteran of issues related to Gaucher Disease. Holding degrees from Alfred University, the University of Bridgeport, and the University of Connecticut, he is a professional psychologist who has been very successful with challenging assignments. He has designed and implemented inpatient treatment programs for violent patients with chronic mental disorders, participated in disaster responses, and has performed many crisis assessments in hospital emergency departments as well as trauma therapy in the outpatient setting. At the present time he is providing psychological assessment services in a group practice, participates on a project researching a novel treatment for post-combat stress, and teaches graduate students and chairs their doctoral dissertation committees in a practitioner training program. But any opportunity to work in, or on behalf of the Gaucher community is always the priority.
Robert Ostrea is the National Partnerships Manager for Western Governors University (WGU), a non-profit, online, accredited university with accelerated programs geared towards the working professional. Robert has been involved in business development and promoting higher education for over fifteen years, working primarily with adult professionals in business, teacher education, information technology and healthcare. Robert is also involved in local charities such as the Make-A-Wish Foundation and the Ronald McDonald House of Southern Nevada. He is also the co-founder of the Little Miss Hannah Foundation, whose mission is to help enhance the quality of life for young children diagnosed with life-limiting rare diseases, undiagnosed complex medical needs, and children who have been placed in hospice or palliative care in Southern Nevada. Robert is Dad to Ethan (18), Abigail (15) and Hannah, who lost her battle to Neuronopathic Gaucher’s Disease at the age of 3. Influenced by his personal experience caring for Hannah coupled with his desire to be more effective in advancing the mission of the Little Miss Hannah Foundation, Robert pursued and completed an MBA with an emphasis in Healthcare Management and an MPA with an emphasis in Government and Policy. Robert lives with his wife Carrie and their children in Henderson.
Nancy is the mom of two daughters who were diagnosed with Type 1 Gaucher Disease in 1983. Her family actively participated in clinical trials at the National Institutes of Health leading to the approval of the first Enzyme Replacement Therapy. She holds a B.S. in Speech and Hearing from Florida State University and an M.Ed in Audiology and Speech Pathology from University of Florida. After a professional career teaching Deaf, and then learning disabled students, she earned a Doctor of Medical Humanities degree from Drew University in 2013. Caregiving, disability rights, accommodations, and education are her passions, and she hopes to assist patients and families who have all types of Gaucher Disease with these serious concerns. She is a Certified Hospice Volunteer, and has assisted with children’s grief groups. She has amassed a library of clinical archives detailing the medical history of Gaucher Disease. In addition to being a published author, she teaches journal writing groups in expression and healing. Currently a docent/interpreter at the Museum of American Glass at Wheaton Arts in New Jersey, she finds great joy in creating glass mosaics and watching those who make glass that lets the light in.
Randi Grunstein is a mom of a teenage daughter with Gaucher Type 1. She has been active in advocating for and guiding her daughter through the challenges of growing up with Gaucher. Her daughter was diagnosed at 4 and started treatment at 6. Randi works part time for a children’s hair care company overseeing Customer Experience and their Donations & Giving program. She is passionate about fundraising for Gaucher Disease and served on the NGF Auction Committee. Aside from the fundraising piece she is dedicated to helping guide other new Gaucher parents through the process with a sense of calm and even humor. Her “You got this” attitude is one she wants to share with the community. Randi lives in Ramsey, NJ with her husband Rick, her 2 daughters Emma and Aerin, and her gorgeous dog Bailey.
Fan Ding was diagnosed with Type 1 Gaucher at age 2 in Beijing, China, where she was born. She was the first Gaucher patient to receive Enzyme Replacement Therapy (ERT) in China. Due to the absence of insurance coverage for the treatment in China, she was not receiving the proper dosage based on weight and had a bone crisis at age 12. Fortunately, Fan’s parents never give up on their daughter’s life and her dad brought her to UPMC of Pittsburgh to seek treatment under the care of Dr. John Barranger. She has been studying and working in Pennsylviania since then, getting a B.S. in Finance from Penn State University and an MBA degree from Duquesne University. Motivated by her life experience, she’s passionate in helping others in the Gaucher Community in any way possible. Fan still lives in Pittsburgh, working as a Senior Consultant at a large health care company.
Melissa Landau Steinman is a lawyer and a mom to two fabulous young men, not necessarily in that order. She was diagnosed with Type 1 Gaucher Disease 22 years ago via genetic testing while pregnant with her older son, and her younger son has Type 1 Gaucher as well. When he was born, she strengthened her commitment to contribute to the Gaucher Community however she could—as a parent and as a patient–participating in advisory panels, clinical testing, and advocacy whenever the opportunity arose. She is thrilled to be involved in the Gaucher Community Alliance. Melissa practices advertising, marketing and consumer protection law at Venable LLP in Washington DC, helping both brands and not-for-profit organizations on complying with federal and state laws applicable to marketing and consumer protection, with a particular focus on social media advertising and promotions such as sweepstakes, contests, and raffles. Ms. Steinman received her B.A. from Columbia University and her J.D. from Harvard Law School, and has lived in Washington DC for 25 years, which makes her very nearly a native!
Emma is a passionate rare disease advocate with type 1 Gaucher. She is a past board member of the National Gaucher Foundation of Canada and past advisor to the European Patient Ambassador Programme. She has worked closely with Global Genes to develop the RARE Toolkits on using stories and social media to raise awareness of rare diseases. Working with her sister as the illustrator, Emma produced Emma’s Garden, a lively digital story about growing up with Gaucher disease. Told from a child’s perspective, the story reflects the importance of a loving and supportive network, healthy active lifestyle choices, and advancements in medical science as key ingredients to living well in spite of Gaucher disease. Inspired by her experience as a patient, Emma recently started her own business to provide Creative Companionship visits, an extension of home care, to seniors in the comfort of their homes. She also works as a horticultural therapist in long-term care, where she promotes the benefits of connecting with nature for health and well-being. An avid runner, Emma has completed a number of marathons as part of the Running for Rare Team, including a 100 km ultramarathon in honor of a friend living with Parkinson’s and Gaucher diseases. She is thrilled to join the Gaucher Community Alliance and Professional Advisory Committee and is strongly committed to advancing efforts to support research into types 2 and 3 Gaucher and the link between Gaucher and Parkinson’s. Emma remains an outspoken advocate for transparent discussions around drug pricing, authentic patient input into drug development, and patient access to treatment.