Erin Kelly Bean

Erin Kelly Bean is the oldest daughter of Jim and Jill Kelly. She has always had a passion for writing, journaling and sharing her faith. A sought-after speaker to young women, Erin has co-authored five books with her sister, Camryn. She graduated from Liberty University in Lynchburg, Virginia. Erin lives with her husband, Parker.

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Catie Becker, NP | Pediatric Nurse Practitioner

Catherine (Catie) Becker is a Pediatric Nurse Practitioner at Massachusetts General Hospital (MGH). Catie received her master’s degree in Pediatric Acute/Chronic Advanced Practice Nursing from the University of Pennsylvania. She has spent the last 15 years working in pediatric neurology at MGH as. Catie joined the MGH Leukodystrophy clinic in 2011. Since 2011 she has been fortunate to work with a multidisciplinary team of care providers treating both children and adults with leukodystrophy, while participating in multiple ongoing clinical trials. Catie looks forward to the Hunter’s Hope meeting every year where she leaves feeling even more inspired and determined to push care forward for every individual living with a leukodystrophy.

Kelly Bossola PT, MSPT | Physical Therapist

Kelly Bossola PT, MSPT, Board Certified Pediatric Clinical Specialist had been working with Dr. Maria Escolar in the UPMC Children’s Neurodegenerative Rare Disease Clinic for over 10 years. In NDRD she had participated in evaluations and clinical research studies. Kelly is a leading expert for assessments in rare diseases, orthotic management, serial casting and mentoring professionals. In 2023, she joined Forge Biologics, a member of Ajinomoto Bio-Pharma Services and leading manufacturer of genetic medicines. Kelly is the Behavioral Outcomes Specialist for the clinical programs and most recently began her role as Patient Advocate in the company.  Combining her love for working with patients and families and supporting the Rare Disease Community makes this an exciting new adventure a perfect pairing. Kelly is looking forward to hearing from you and your family during this symposium.

Beth Brooks

Beth Brooks is an instructional designer specializing in the development of eLearning courses for medical professionals. With over 20 years of experience in education and advanced degrees in education and instructional technology, Beth brings a strong foundation in adult learning and development. Her expertise lies in creating accessible, innovative learning experiences for diverse audiences. Beth’s work has expanded knowledge of HIV prevention, treatment, and linkage to care among medical professionals across the country.

Beth’s passion for accessible learning is deeply personal. Her daughter Eden’s experience with Metachromatic Leukodystrophy inspired Beth to educate medical professionals about the condition and advocate for compassionate care. She hopes that the increased availability of online courses will familiarize more providers with Leukodystrophy, allowing families to focus on cherishing time with their children rather than struggling to secure appropriate care. Beth’s greatest joys are her daughters, Eden and Estela, who continue to inspire her work in medical education.
Barbara Burton

Barbara K. Burton. MD | Clinical Geneticist, Professor of Pediatrics

Dr. Barbara K. Burton is a Professor of Pediatrics at the Northwestern University Feinberg School of Medicine and an Attending Physician in the Division of Genetics, Birth Defects and Metabolism at the Ann & Robert H. Lurie Children’s Hospital of Chicago. She is Board certified in Pediatrics, Clinical Genetics and Clinical Biochemical Genetics. Her clinical and research interests are focused on inborn errors of metabolism and newborn screening. Dr. Burton is an investigator in numerous natural history studies and clinical trials of new therapies for various metabolic disorders.   She has published over 250 peer-reviewed articles, 50 chapters in books and is an editor of two textbooks.

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Annamarie Dillon, MsC

Executive Director, Global Patient Advocacy, Orchard Therapeutics

Annamarie is passionate about partnering and learning from rare disease patient communities. Working in rare disease patient advocacy roles within industry for more than 15 years, she recognizes the importance of integrating patient perspectives along the drug development pathway. She embraces opportunities to foster mutually beneficial partnerships with patient groups on areas of common interest, including research and clinical trial design, disease awareness, newborn screening, capacity building, patient access and supporting networking opportunities.  Annamarie believes in the promise of innovative therapies and has worked to support advocacy efforts across rare diseases employing various therapeutic approaches including enzyme replacement, RNA technology and ex-vivo hematopoietic stem cell gene therapy at various stages of drug development. Prior to joining Orchard Therapeutics in 2019 where she now leads global patient advocacy efforts, Annamarie worked at ProQR Therapeutics and at Genzyme (Sanofi Genzyme).

S. Ali Fatemi, MD | Pediatric Neurologist

Dr. Ali Fatemi, is the Chief Medical Officer at Kennedy Krieger Institute, a pediatric neurologist and the director of the Moser Center for Leukodystrophies at Kennedy Krieger Institute and holds the Blum-Moser Chair for Pediatric Neurology. Dr. Fatemi is also professor of neurology and pediatrics at Johns Hopkins University. His research focuses on gene targeted therapies for the leukodystrophies.

Jennifer Yacavone Fitzgerald, MOT, LMT

President/Owner Yacavone Home Therapy
I grew up in Homer, NY, a small town just 30 min south of Syracuse. Since the age of 3, I knew I wanted to work with people in the health care field. I ended up becoming an OT, since I wanted 1:1 patient care as well as a holistic approach to meet the child and family’s needs. I received a BS degree in Rehabilitation Services (concentration in medical therapeutic), a license in massage therapy, and a masters degree in Occupational Therapy. Over the past 23 years I have specialized and found a niche in pediatric therapy with specialties in neuro, sensory processing, feeding/oral motor therapy, aquatic therapy. I have also been a licensed massage therapist of 28 years, certified in Sports, pregnancy/labor/postpartum, and myofascial massage.

Melissa Jablonski

Melissa Jablonski joined the Hunter’s Hope team in 2015. Melissa has had the unique opportunity of being involved in several Hunter’s Hope programs over the past 6 years including Development, Marketing, the LCN, Newborn Screening, and Family Programs. Melissa has a great passion for the mission and values of Hunter’s Hope and a love for the families we serve. She is honored to be a part of this foundation and help provide Leukodystrophy families with love, hope, and support through our programs.

Jill Kelly

In September 1997, three months after their infant son, Hunter was diagnosed with a fatal, genetic disease called Krabbe Leukodystrophy, Jim and Jill Kelly established the Hunter’s Hope Foundation. As Chairman of the Board of Hunter’s Hope, Jill helps children with leukodystrophy and their families by extending them hope and comfort she has received through her relationship with Christ. Jill has written several books and is a NY Times Best Selling Author.

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Joanne Kurtzberg, MD | Jerome Harris Distinguished Professor of Pediatrics

Dr. Joanne Kurtzberg is an internationally renowned expert in pediatric hematology/oncology, pediatric blood and marrow transplantation, umbilical cord blood banking and transplantation, and novel applications of cord blood and birthing tissues in the emerging fields of cellular therapies and regenerative medicine.   Dr. Kurtzberg serves as the Director of the Marcus Center for Cellular Cures (MC3), Director of the Pediatric Transplant and Cellular Therapy Program, Director of the Carolinas Cord Blood Bank, and Co-Director of the Stem Cell Transplant Laboratory at Duke University.

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Kristen Malfara

Kristen Malfara is the proud mother of Morgan, who in 1997 was born with a rare neuromuscular disorder classified as a Leukodystrophy. She is also the Founder of The M.O.R.G.A.N. Project which was established in 2001. Morgan is the inspiration and namesake of this organization. In 2023, Kristen made the bittersweet decision to dissolve the organization. The M.O.R.G.A.N. Project established an endowment with Hunter’s Hope so that Morgan’s legacy can live on and continue to provide hope and support to the rare disease and disabled community nationwide. Morgan is now 26 years old. In addition to Morgan, Kristen is the proud parent of two other sons, Jordan and B.J.

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Learn more about the Morgan's Legacy Gift Endowment here

Deitrich Matern, MD, PhD | Director, Biochemical Genetics Laboratory at Mayo Clinic

Dr. Dietrich Matern is a Professor of Laboratory Medicine, Medical Genetics and Pediatrics, and co-director of the Biochemical Genetics Laboratory at the Mayo Clinic in Rochester, Minnesota. He has a primary interest in the biochemical diagnosis of inborn errors of metabolism, particularly lysosomal disorders, mitochondrial fatty acid beta-oxidation disorders, organic acidemias, and amino acidopathies.

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Joe Orsini, PhD | New York Newborn Screening Program

Dr. Joseph Orsini is the Deputy Director for the New York Newborn Screening Program. Dr. Orsini’s laboratory was the first to implement newborn screening for Krabbe disease (KD), applying the research method of Gelb and coworkers to high throughput screening. Dr. Orsini worked with Genzyme (Currently Sanofi) in developing a test that could screen for psychosine, this is a substrate of galactocerebrosidase, the enzyme that is deficient in Krabbe disease patients.

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