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Board of Directors

The NNPDF Board of Directors serve in a volunteer capacity, without remuneration for their work. Most NNPDF Board Members have loved ones who are affected by Niemann-Pick Disease, whether children, grandchildren, cousins, or even themselves. Thus, they are highly motivated to see effective treatments and a cure become a reality as soon as possible, and they are dedicated to maximizing the use of the foundation’s resources for the benefit of all affected by this devastating disease.

Thank You to our dedicated Board Members for all you do to support our Niemann-Pick community, continue to find ways to move research forward, and deliver hope to our families.

2021 NNPDF Board of Directors

Executive Committee:

Justin Hopkin, MD   Board Chair

Father of Garrett, ASMD  |  Rochester, NY

Justin’s Statement of Commitment:  I am honored to recently be selected as a board member for the NNPDF. As a board member, I will do my best to make the NNPDF fiscally sound and solvent organization. I look forward to helping the NNPDF assist great researchers who are working toward treatments for NPD. The Foundation has been an excellent resource for me and my family, and I hope to help the Foundation continue to grow in its role as the center for information sharing for NPD.

Becky McGuire   Vice Chair

Cousin of Kelly, NPC  |  Simsburry, CT

Becky’s Statement of Commitment:  I believe in helping build and strengthen the value and relationships for resources for families in a variety of ways. I enjoy being a team player, traveling and representing the industry in a positive uplifting manner. You have to have a passion to drive you every day. I will support families through the roller coaster of NPD. My cousin Kelly was diagnosed in 2005 with NPC1. I have been an advocate for her, learning as much as I can about the disease while helping my family through a very harsh reality of this awful disease. It is my duty to provide my family and others with all the support I can.

Liz Heinze   Secretary

Mom of Tyler, Katie, & Faith, NPC (In Memory)  |  Sheboygan, WI

Liz’s Statement of Commitment:  Our family has been a part of the NNPDF since 2005 and have attended every conference except one since 2007. It is my goal to take what I have learned while caring for our 3 NPC children and share that with a community that needs the support and guidance. I plan to work with the board members, community, and the NNPDF staff members to offer more support in multiple areas to make this undesirable journey one that is manageable from diagnosis, to the journey, to the healing aftermath. I also plan to honor my hero’s in the process including our daughter Serina and our angels Tyler, Katie, and Faith.

Michael Smith   Treasurer

Spouse of Anne, ASMD  |  Satellite Beach, FL

Directors at Large:

Chrystelle Bougault

Industry Executive  |  San Diego, CA

Chrystelle’s Statement of Commitment:  I am honored to join the NNPDF foundation as a board member. Having worked on the ASMD clinical trials, I feel deeply connected to the NPD community. I will dedicate my time to ensure that the foundation remains a powerful resource and keeps providing constant information about these lysosomal storage disorders. I will offer broad knowledge about the clinical trial pipeline and the different clinical studies that are currently opened. I will bring my energy to support the NPD families and will do my best to make your projects come true.

Meghann Ferguson

Mom of Liam, NPC  |  Catharpin, VA

Meghann’s Statement of Commitment:  The NNPDF has been an exceptional resource for education and support for our family and it is an honor to serve on the board. It is my hope that I can assist in providing information and support for other families, while also aiding in the growth of the organization.

Cara Gilmore

NPC  |  Pittsburgh, PA

Cara’s Statement of Commitment:  I am honored to serve on the NNPDF Board of Directors. As an adult-onset NPC1 patient, my goal is to build awareness of NPC and ASMD to promote early diagnosis and approved treatments. After my diagnosis in 2019, the NNPDF has provided me with a supportive community and I hope to be a resource and support to others. I look forward to collaborating with the NNPDF team to advocate for NPD patients and families and fight for potential cures.

Mary Frances Harmon

Industry Executive  |  St. Simons Island, GA

Mary Frances’ Statement of Commitment:  I recently saw a quote that has inspired me in both my professional and personal life…

“If you have knowledge, let others light their candles in it.”
Margaret Fuller

My career has been dedicated to healthcare since 1984 and I am most passionate about helping families living with rare diseases find treatments, hope, and, support as they navigate their journeys. I have experiences and knowledge from a variety of perspectives, both personally and through the biopharmaceutical industry, that I will share and help guide the National Niemann-Pick Disease Foundation in pursuit of their mission. I am committed to making a difference in the lives of those living with NPD and will relentlessly pursue all avenues to help patients and families. 

Kari Lato

Patient Advocacy Specialist  |  Ixonia, WI

Kari’s Statement of Commitment:  I am humbled by the opportunity to serve the NPD community. For nearly two decades, I have worked alongside patient advocates in the rare disease community across the country, fighting for changes in state laws that put patients first. I also support a close family member living with a rare disease. As a board member, I will tirelessly advocate for growing the Foundation to continue providing the best possible support for the NPD community. At the same time, I will help ensure that the board stays fully committed to its highest priority: finding a cure.

Leoni 2021
Anthony Leoni

Father of Jessica, NPC (In Memory)  |  Los Angeles, CA

Anthony’s Statement of Commitment:  My wife Lisa and I have been on this journey since Jessica was diagnosed before her 1st birthday, in 1998. We started our fight for Jessica then, and haven’t stopped. It has taken many twists and turns and we have learned a lot. We hope we can help others with similar challenges. We have fought the fight and continue to love our Jessie. We see what other families are going through and want to help them, too. We are all members of a club that none of us wanted to join and together we can help make the lives of our precious children better.

Paul Merrigan

Industry Executive  |  Newton Centre, MA

Paul’s Statement of Commitment:  I believe in NNPDF’s mission and vision and am honored to have the opportunity to serve the NPD community as a Board Director for the NNPDF. Having worked in the biopharmaceutical industry for over 25 years focused entirely on bringing treatments to patients suffering from rare diseases, I have had the privilege of forming deep relationships and productive collaborations with several rare disease organizations. I am deeply committed to making a meaningful difference in the lives of those people and their families affected by NPD and believe that with my experience I can help with bringing more hope by accelerating early diagnosis, new treatments and pushing for a cure.

NNPDF Board Consultants

(Pro Bono)
Lieberman 600
Andrew Lieberman, MD, PhD

NNPDF Scientific Advisory Board Chair
Professor, Department of Pathology
University of Michigan Medical School  |  Ann Arbor, MI

Mendel, Stephen Attorney - Legal Advisor
Stephen Mendel, Attorney – Legal Advisor

The Mendel Law Firm, L.P.  |  Houston, TX

NNPDF Board MEETINGS

The members of the National Niemann-Pick Disease Foundation (NNPDF) Board will meet on the below noted dates via conference call. For more information contact nnpdf@nnpdf.org.

June 28, 2022 | 8:00 pm (EST)
July 28, 2022 | 8:00 pm (EST)
Sept 20, 2022 | 8:00 pm (EST)
October 18, 2022 | 8:00 pm (EST)
December 20, 2022 | 8:00 pm (EST)

NNPDF FINANCIALS

Emeritus board memBErs

Former members of the NNPDF Board – with great appreciation for your years of service we THANK YOU!

SERVED AS NNPDF BOARD CHAIR
Lisa Chavez
Mother of Breann  |  02/10/2003 – 06/08/2006  |  NPC

 

SERVED AS NNPDF BOARD MEMBERS
Kara Ayik
Mother of Evren  |  ASMD

Deanna Bourgeault
Mother of Kaitlyn  |  07/01/2009 – 03/22/2012  |  NPA

Rhonda Brown-Kehoe
Mother of Graham  |  09/23/1992 – 03/16/2003  |  NPC

Alexandra Conniff, PhD
Educator and Friend of Lee King  |  01/13/1991 – 02/26/2011  |  NPC

Sandra Cowie
ASMD

Jill Flinton
Mother of Daniel  |  12/7/2006 – 11/11/2011  |  NPC

Nicole Farhat, MSN, CPNP
Pediatric Nurse Practitioner

Margo Frey
ASMD

Susan Green – Mother of
Murray  |  02/05/1978 – 10/14/1996  |  NPC
Roy  |  04/14/1976 – 11/17/2018  |  NPC

Lauren Grodin, PsyD
Sister of Scott Marocco  |  08/28/1986 – 06/06/2000  |  NPC

Leslie Hughes
Great-Aunt of Riley Corbitt  |  07/27/02 – 10/29/2008  |  NPC

Ryan Kelly
Cousin of Erin Roberts  |  04/05/1980 – 12/01/2004  |  NPC

Melissa King
Mother of Lee | 01/13/1991 – 02/26/2011  |  NPC

Kathy Lane
In honor of both Grandsons, NPB

Elissa Miller
Mother of Jack  |  ASMD 

Robin K. Montvilo, RN, PhD
Friend of Graham Kehoe |  09/03/1992 – 03/16/2003  |  NPC

Carl “Wayne” Moore – Uncle of
Andrew Limer  |  04/27/1996 – 07/27/2005  |  NPC
Katie Limer  |  08/06/2005 – 08/11/2015  |  NPC

Hunt Ozmer
Father of Hunter  |  06/07/1985 – 01/03/2008  |  NPC

Anne OConnor-Smith
ASMD

Wayne Palmiter – Father of
Rachel  |  12/20/1984 – 8/28/2015  |  NPC
Ryan  |  05/04/1988 – 02/02/2019  |  NPC

Darrile Papier 
Mother of Dillon  |  08/25/2002 – 04/06/2017  |  NPC

Heather Patenaude-Taillefer
Mother of Monica  |  08/5/2009 – 05/2/2012  |  NPC

Doug Pease – Uncle of
Adam  |  01/13/1990 – 06/04/2000  |  NPC
Amanda  |  11/23/1994 – 12/28/2004  |  NPC

Holly Roberts
Mother of Erin  |  04/05/1980 – 12/01/2004  |  NPC

Nancy Sullivan
Mother of Karen Sullivan  |  06/27/1970 – 04/12/2004  |  NPC

Brenda Teller
Mother of “Little Roy”  |  02/26/1990 – 12/20/2003  |  NPC

Jim Thompson
Brother of Kelly  |  01/16/1979 – 12/06/2021  |  NPC

Tammy Vaughan – Mother of
Alex  |  01/18/1988 – 12/23/1992 |  NPC
Laura  |  01/16/1995 – 11/08/2001  |  NPC

Barb Vorpahl
Mother of Stacey  |  01/03/1985 – 10/09/2004  |  NPC

Missy Ward – Mother of
Adam  |  01/13/1990 – 06/04/2000  |  NPC
Amanda  |  11/23/1994 – 12/28/2004  |  NPC

Supporting one another. Supporting our community.