Michael Gelb, PhD | Boris and Barbara L. Weinstein Endowed Chair, University of Washington
Dr. Michael H. Gelb is the Boris and Barbara L. Weinstein Endowed Chair in Chemistry in the Department of Chemistry and Department of Biochemistry at the University of Washington. He holds a Ph.D. from Yale University, and was an American Cancer Society Postdoctoral Fellow at Brandeis University with Professor Robert H. Abeles. In 1985, he joined the faculty of chemistry at the University of Washington. The Gelb research laboratory combines chemical and molecular and cellular biochemistry techniques to study enzymatic processes of medical importance.
Major achievements include: 1) Discovery of protein prenylation; 2) The development of Isotope-Coded Affinity Tags (ICAT) for quantitative proteomics; 3) The development of assays for newborn screening of metabolic diseases; 4) Development of drugs to treat tropical parasite diseases; 5) Discovery of phospholipases A 2 and understanding their mode of action. In the area of newborn screening, assays for approximately half of the diseases added to the Recommended Newborn Screening Panel (RUSP) over
the past decade have been developed in the Gelb laboratory.
He has received a number of awards including the Repligen Award and the Pfizer Award in Biological Chemistry (American Chemical Society), the ICI Pharmaceuticals Award for Excellence in Chemistry (AstraZeneca, Inc.), the Gustavus John Esselen Award (Harvard University), Merit Award (National Institutes of Health), Medicines for Malaria Venture Project of the Year (MMV, Geneva), Guthrie Award (International Society of Neonatal Screening), and the University of Washington Faculty Lecture Award. He is a Fellow of the American Association for the Advancement of Sciences and a Fellow of the Alfred P. Sloan Foundation.
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.
The Carolinas Cord Blood Bank is an FDA licensed public cord blood bank distributing unrelated cord blood units for donors for hematopoietic stem cell transplantation (HSCT) through the CW Bill Young Cell Transplantation Program. The Robertson GMP Cell Manufacturing Laboratory supports manufacturing of RETHYMIC (BLA, Enzyvant, 2021), allogeneic cord tissue derived and bone marrow derived mesenchymal stromal cells (MSCs), and DUOC, a microglial/macrophage cell derived from cord blood.
Dr. Kurtzberg’s research in MC3 focuses on translational studies from bench to bedside, seeking to develop transformative clinical therapies using cells, tissues, molecules, genes, and biomaterials to treat diseases and injuries that currently lack effective treatments. Recent areas of investigation in MC3 include clinical trials investigating the safety and efficacy of autologous and allogeneic cord blood in children with neonatal brain injury – hypoxic ischemic encephalopathy (HIE), cerebral palsy (CP), and autism. Clinical trials testing allogeneic cord blood are also being conducted in adults with acute ischemic stroke. Clinical trials optimizing manufacturing and testing the safety and efficacy of cord tissue MSCs in children with autism, CP and HIE and adults with COVID-lung disease are underway. DUOC, given intrathecally, is under study in children with leukodystrophies and adults with primary progressive multiple sclerosis.
In the past, Dr. Kurtzberg has developed novel chemotherapeutic drugs for acute leukemias, assays enumerating ALDH bright cells to predict cord blood unit potency, methods of cord blood expansion, potency assays for targeted cell and tissue based therapies. Dr. Kurtzberg currently holds several INDs for investigational clinical trials from the FDA. She has also trained numerous medical students, residents, clinical and post-doctoral fellows over the course of her career.
Anna Grantham | Hunter's Hope Foundation
Anna Grantham is the Director of Newborn Screening and the Leukodystrophy Care Network at Hunter’s Hope Foundation. Since 2011, she has worked to support families affected by leukodystrophies and to help advance newborn screening and care for these diseases.
In her role, Anna helps lead state and federal advocacy efforts, coordinates the Krabbe Newborn Screening Council, and works closely with medical and scientific experts to improve newborn screening for Krabbe disease and other leukodystrophies. She also directs the Leukodystrophy Care Network, a group of centers and providers working to improve care for individuals and families affected by leukodystrophies.
Phil May
Phil May is a Hunter’s Hope Board member. He will be the Host of the Welcome Dinner as we introduce our families.
You can learn more about Phil and his family story in the Symposium Family Directory.
Symposium Family Directory
Abner Family
The Abner Family will be leading the Symposium Sibling Challenge.
You can learn more about their family story in the Symposium Family Directory.
Symposium Family Directory
Drake and Christina Levasheff
Drake and Christina Levasheff lead our morning Prayer Parties.
You can learn more about their story in the Symposium Family Directory.
Symposium Family Directory
Wyatt Abner
Wyatt Abner will be leading the Sibling Sharing Session.
You can learn more about Wyatt and his family story in the Symposium Family Directory.
Symposium Family Directory
Mel Sereno
Mel Sereno will be leading the Men’s Sharing Session.
You can learn more about Mel and his family story in the Symposium Family Directory.
Symposium Family Directory
Christina Levasheff
Christina Levasheff will be leading our Women’s Sharing Session.
You can learn more about Christina and her story in the Symposium Family Directory.
Symposium Family Directory
Eli and Abby Smith
Eli and Abby Smith will be leading the sibling worship session on Friday night.
You can learn more about Eli and Abby and their family story in the Symposium Family Directory.
Symposium Family Directory
Zac and Michelle Leeker
Zac and Michelle Leeker are both active in the Newborn Screening community. The Leekers have spent the better part of two decades advocating for expanded newborn screening, raising awareness for Krabbe Disease through medical school scholarships, and providing support to recently diagnosed families.
In 2022, Zac became the program manager of newborn screening in his home state of Kansas. Through his efforts, expanded the state screening panel by 5 conditions, including Krabbe Disease. In 2025 Zac transitioned to taking over newborn screening in Iowa, and tangentially, North Dakota, South Dakota, and Alaska.
You can learn more about their family story in the Symposium Family Directory.
Symposium Family Directory
Mike and Kelly Bonacorsa
Mike and Kelly Bonacorsa are both active in the Newborn Screening community and have advocated for improved NBS on a state and federal level.
You can learn more about their family story in the Symposium Family Directory.
Symposium Family Directory
Elisa Seeger
Elisa Seeger is active in the Newborn Screening community through her foundations the ALD Alliance and NBS Alliance.
You can learn more about Elisa and her family story in the Symposium Family Directory.
Symposium Family Directory
Kaprice Shullanberger
Kaprice Shullanberger is active in the Newborn Screening community and has advocated on both the state and federal level.
You can learn more about Kaprice and her family story in the Symposium Family Directory.
Symposium Family Directory
Sensory Sisters
Kristen Malfara, Deborah Hecker, Jennifer Fitzgerald
Kristen and Morgan Malfara are from Ocala, Florida. Morgan is now 27, and has Aicardi-Goutieres Syndrome (AGS). Kristen is the founder of The M.O.R.G.A.N. Project and spent 22+ years serving the disability community with unique and innovative multi-sensory programs and providing small grants to families.
In 2023 they partnered with Hunters Hope when they established The Morgan’s Legacy Gift Endowment Fund to provide perpetual financial support for the Morgan’s Legacy Gift Program, which supports families with a gift of up to $1,000 for something that will enhance their quality of life, and provide the tools to help a parent help their child. Kristen has been a member of the LCN Steering Committee since its inception, and supports the annual Family Symposium by creating a Sensory Room for the families to enjoy. This year she is overjoyed to be bringing Morgan with her!
Debbie Hecker is from New London, Connecticut and she and Kristen have been best friends for over 50 years! Jen Fitzgerald is from Melbourne, Florida and in addition to her friendship with Kristen and role on the board of The M.O.R.G.A.N. Project, she was Morgan’s longtime Occupational Therapist. Last year Deb & Jen joined Kristen at Symposium for the first time and the Sensory Sisters were born!
This year, in addition to the Sensory Room itself, the Sensory Sisters will be sharing their expertise with a hands-on presentation and demonstration of OT techniques to support the multi-sensory approach. Additionally, they will be poolside several times throughout the week for OT in the pool. There will also be a sign-up sheet for anyone that would like to do a one-on-one with Jen for creative OT ideas for working with your own child or to discuss ideas with Kristen for creating a sensory space in your own home for your child.
Please join us in the Sensory Room for some therapeutic fun!
Kristen Malfara - Sensory Sister
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.
While she still refers to herself as a “stay at home mom,” Kristen remains a leader in the local disabilities community and beyond. The M.O.R.G.A.N. Project was a labor of love for over two decades. The organization helped many families of children living with diagnoses of so-called orphan diseases who need help adapting to life in a world not designed for them. Kristen believes “that our choices, more than our abilities, show who we really are”, and that every family she helped is just one more way that she gets to honor Morgan. Kristen and The M.O.R.G.A.N. Project have been recognized and featured in local and national media outlets, and have been awarded numerous honors over the years.
One of Kristen’s proudest accomplishments has been joining the Hunter’s Hope Leukodystrophy Care Network Steering Committee. She believes that this is her opportunity to come full circle and give back to those that were there for her when her own son was diagnosed many years ago.
