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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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 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. She has been graciously invited to speak and share the Kelly Family story.
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Anna Grantham
Since joining the Hunter’s Hope team in 2011, her primary focus has centered around the foundation’s commitment to advancing Newborn Screening (NBS) for Krabbe Disease and other Leukodystrophies. Anna leads all advocacy efforts for expanded NBS at both the state and federal level as well as the foundation’s Krabbe Newborn Screening Taskforce. This taskforce formed in 2015 and is a partnership with leading NBS and Krabbe experts and has systematically made continuous improvements to NBS for Krabbe through various research efforts, writing workgroups, and the Krabbe NBS Council. Additionally, Anna serves as the director of the foundation’s Leukodystrophy Care Network, a cohort of centers of excellence and providers dedicated to providing proactive, multidisciplinary care to patients with Leukodystrophies.
Melissa Jablonski
Melissa 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.
Kristen & Morgan 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 and Executive Director of The M.O.R.G.A.N. Project, established in 2001. Morgan is now 25 years old and is the inspiration and namesake of this organization, whose acronym stands for Making Opportunities Reality Granting Assistance Nationwide. 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 is most definitely a leader in the local disabilities community and beyond. The M.O.R.G.A.N. Project is her labor of love created more than two decades ago, and that is dedicated to helping 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 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.
In 2015 The M.O.R.G.A.N. Project became one of the founding members of the World Leukodystrophy Alliance, and 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 those many years ago.
Mary Tutterow
I am a wife, mom, author, speaker, teacher and caregiver to a special needs child who is medically complex. I wrote The Heart of the Caregiver® during some of our most difficult years. I began teaching the content to small groups as an excuse to have other caregivers to share with. Only those who have experienced being a caregiver themselves seem to fully understand. It is now my joy to help other frazzled caregivers find beautiful transformation in the caregiving process – for themselves, their family and the people they care for.
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