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, JD is 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.
Marc Garelick is a family law attorney based out of Orange County, CA, where he resides with his wife and son. He was diagnosed with Type 1 Gaucher’s disease when he was 22 years and suffering from Non-Hodgkin’s Lymphoma. After a long battle, Marc’s cancer went into remission and he got his Gaucher disease’s involvement and symptoms under control. Marc is excited to be a part of the Gaucher Community Alliance to help grow the community awareness and strengthen its bond.
Marc is a litigator, whose clients include high-asset and high-income individuals in complex, contested family law cases. He helps resolve issues involving custody, visitation, support and domestic abuse. Marc is particularly skilled with valuations of businesses and division and characterization of community and separate property assets. He is active in the Orange County Bar Association, Family Law Section, sitting on the executive committee. Marc also has several philanthropic and civic interests, which include serving on the board of directors of the Jewish Federation & Family Services (JFFS) and the Jewish National Fund in Orange County. Marc attended University of California, Irvine where he received his B.S. degree in Cognitive Psychology, with a minor and classical civilizations. He went on to earn his Juris Doctorate. from Southwestern Law school, where he started a Voluntary Income Tax Assistance (VITA) program to help low-income individuals with tax preparation. Marc was recognized by the JFFS with its Blossom Siegel Young Leadership Award and for several recent years as a Southern California Super Lawyers “Rising Star.”
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.
Theresa Sweeny is the mother of three young men, all of whom have a different rare disease (100% batting average! Go big or go home for rare!). Her middle son, Noah, has neuronopathic Gaucher type 3, which has proven to be the most challenging. As Noah began to rapidly decline, Theresa became deeply immersed in the Gaucher community with both families and the industry’s leading doctors, researchers, and key opinion leaders. Her work has been primarily focused on forging relationships within the neuronopathic and type 1 Gaucher communities. In 2013, she won the prestigious Shire BRAVE award for Rare Caregiving. The National Gaucher Foundation in 2018 asked Theresa to be the Parent Liaison point of contact for Gaucher families of The Courageous Parents Network, whose mission is to empower parents and families of children living with serious illness. Theresa is proud that Noah was chosen to have his portrait painted by Ian Mohon of Rhode Island, to represent Gaucher in the prodigious Beyond the Diagnosis rare disease traveling art exhibit. A phlebotomist by trade, Theresa’s passions are learning about rare disease research for neuronopathic Gaucher, advocating for the disabled and rare disease patients for long-term care, supporting the Arts in rare disease, and attending scientific and patient conferences.
She lives in Ohio, where she dreams of eternal sun and travel. She feels it is a privilege to represent neuronopathic Gaucher on the Gaucher Community Alliance Board.
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 Pennsylvania 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 about 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.
Ken is a type 1 Gaucher patient who has been on ERT for 25 yrs. He was active in NGF for several years being a strong advocate for Gaucher disease. After graduating Duquesne University School of Pharmacy, he practiced as a hospital pharmacist for 4 yrs. He then went to medical school followed by an internal medicine residency. He practiced Internal Medicine for 30 yrs and is now retired from practice. One of his passions is playing the piano professionally, and enjoys playing for medical fundraisers. Ken is looking forward to being on the board & contributing to the mission of the Gaucher Community Alliance.
Diana is a caregiver to her son who has nGD. She studied accounting in school, but believes God let her change to her other career of taking care of a rare disease child. During these years, she tries to keep a good balance between self care and her child’s care, and also focus on his study, behavior and treatments/therapies. She continuously researches issues related to GD/nGD to support patients and research. Diana is located in Easton, PA and likes to travel, especially visiting zoos with her son. She also enjoys reading and exercise and loves to spend time with her lovely husky dog.
Lauren is the founder of Gaucher Stories, a website that she was inspired to create after being diagnosed with Type 1 Gaucher disease at the age of 18. In addition to her website, Lauren advocates for Gaucher Disease awareness by sharing her story. She has been interviewed by Rare Disease Report, featured as a WeGoHealth Patient Leader and written about her experience for various digital communities, including The Mighty. In 2018, Lauren was selected to be a part of the National Gaucher Foundation’s inaugural Ambassador program and continues to advocate for Gaucher Disease and rare disease awareness.
Stacey is the Director of Health Psychology for a large medical group in the Chicago area, and a licensed Clinical Health Psychologist. She additionally holds a Master’s degree in Leadership Development in Healthcare and the Biotechnology Industry. Stacey has a passion for working with individuals living with chronic medical illness as psychologist, healthcare consultant, and speaker. Through her work, she helps patients live healthier, more resilient lives while coping with medical difficulties. Although Stacey works with individuals with a wide range of medical diagnoses, she specializes in individuals living with the special challenges of rare and/or genetic diseases. Dr. Feuer believes that health is more than just the sum of our physical ailments, and aims to help patients develop and increase an overall sense of well-being in their daily lives even while living with chronic medical issues.
Stacey was diagnosed with Gaucher Disease Type 1 in 1997, and has been a speaker and advocate in the Gaucher and rare disease community for more than twenty years. She enjoys educating and connecting with patients, families, medical providers, and industry leaders about the experiences of those living with a rare, genetic disorder. In her free time, she enjoys playing the violin and serving on the board of her local community orchestra.
Amanda is from Grand Prairie, Texas and now lives in Midlothian, Texas, with her husband and two kids. Growing up, she always dreamt of the day she would be a wife and mother. She graduated high school early, enrolled in cosmetology school and became a licensed cosmetologist when her daughter, Bailey, was three months old. Bailey, has neuronopathic Gaucher type 3. She was diagnosed a month before her first birthday in 2008. She has been featured in articles with Love What Matters, Kinbox and The Gaucher Community Alliance as the Rare Disease Day Star 2021. Amanda is truly inspired by Bailey’s courage and hopes being as involved as possible in the Gaucher community will give Bailey a passion to stay involved as she gets older. Being an advocate and a listening ear for all families, especially newly diagnosed ones, is such a passion of Amanda’s! When Bailey was nine she had surgery to have plates and screws placed in her hips as the result of being underdosed for several years. Amanda’s number one goal is to help prevent that type of situation for other families. Bailey’s bravery and joy that she finds in life, even through unimaginable circumstances, motivates Amanda to be a helping hand for other families traveling down a similar road. She feels honored to be a part of the Gaucher Community Alliance and believes the more that we come together and spread awareness, the closer we get to a cure!