Meet Our New Board Members!
Mary Balint
SECRETARY
My name is Mary Balint.  I'm the new secretary for SDSF.  I have custody of my 7 year old granddaughter, Rylie, since birth. She has a clinical diagnosis.  Rylie started getting sick at  4 months old and was clinically diagnosed at 1 1/2 years old  after having neutropenia and pancreatic insufficiency, as well as asthma, Raynaud's Syndrome, pale optic nerve, and clinical dysautonomia POTS. We are very involved with Team Impact and Stonybrook University's soccer team. 
Carolina Cordova
My name is Carolina S. Cordova De la Fuente.  I was born in Buenos Aires, Argentina.  I am an art historian and currently live in Orlando, Florida.  I have a 17-year-old son who was clinically diagnosed with SDS at age 12. 
Michelle Grenell
My name is Michelle and I'm so excited to be a part of the board!  My husband, Justin, and I live in Michigan with our  two kids, Evelynn and Nathan. My goals with joining the board are to help with fundraising and communication with new families. 


 
Eszter Hars, Ph.D.
I joined the Board of Directors in 2019.  I earned my Ph.D. in Molecular Biology from UMDNJ focused on leukemia and cancer research.  Since moving to Boston, I have worked in the biomedical research, software, and scientific publishing industries in various functions, including customer relationship management, sales, support, training, documentation, branding, and marketing.  Currently, I am the president of a biotechnology startup company in the fields of diabetes and degenerative diseases.  I live outside of Boston with my family and enjoy the arts, swimming, and long walks.  As the mother of a child with SDS, I am passionate about helping people affected by SDS and their families.  On the SDSF Board, I am working on marketing and communication, and am a liaison to the SDS Registry.
Savannah Lillywhite
My family and I live in Beaumont, Texas.  We have two children with SDS.  Andrew, who passed away at 3 1/2 months of age in 2012, and Lincoln, born in 2017, who is now 20 months old.  I am interested in helping with fundraising to support families and fund research for a cure.
 
Scott Miller
My name is Scott Miller and I am 18 years old.  I am a patient with SDS and a new board member for SDSF.  I was diagnosed clinical SDS at 5 years old and have been relatively healthy my whole life.  I am working part time as a plumber and going to a community college full time.  I am from Northern Kentucky and am followed in Cincinnati. 
 
Shwachman-Diamond Syndrome Foundation
FOUNDER: Joan Mowery 1994

BOARD OF DIRECTORS

Joan Mowery, Acting President
Mary Balint, Secretary
Bryan Sample, Treasurer
Ed Bickel, Creative Media Chair
Christian Del RĂ©, Communications Chair
Stephanie Gregoretti, Fundraising Chair
Nicole Shen, Membership Chair
Jenni Wachter, Webmaster
Carolina Cordova
Eszter Hars
Michelle Grenell
Savannah Lillywhite
Scott Miller


Pamela Miller, Executive Director

Other Amazing Leaders

Joyce Wall - Anna Angel Basket Coordinator
Maura Donahue - Advisor to the Board
Jess Johnson


ATTORNEY: Ann Bodewes Stephens, Herzog Crebs

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If you'd like to share a fundraiser or some family news or updates, email Christian at  christiandelre@shwachman-diamond.org.

Have an article, update, or fundraising activity you would like to share in a future newsletter?  Email your story to: christiandelre@shwachman-diamond.org.

We would love to hear from you and share your stories!
Shwachman Diamond Syndrome Foundation
888-825-7373
info@shwachman-diamond.org
www.shwachman-diamond.org