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NNPDF Board of Directors


NNPDF 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 advance the Quest for a Cure!


Justin Hopkin, MD – NNPDF Board Chair

Lisa Chavez – NNPDF Vice Chair

Anne OConnor-Smith – Interim Treasurer

Missy Ward – Secretary

Chrystelle Bougault – Director-at-Large

Meghann Ferguson – Director-at-Large

Liz Heinze – Director-at-Large

Becky McGuire – Director-at-Large

Darrile Papier – Director-at-Large




Justin Hopkin, MD – NNPDF Board Chair
Father of Garrett, ASMD   |  Lander, WY

Garrett Hopkin  |  ASMD

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.


Lisa Chavez – NNPDF Vice Chair
Mother of Breann, NPC  |  Farmington, NM

Breann Chavez  |  NPC  |  02/10/2003 – 06/08/2006

Lisa’s Statement of Commitment: 
It’s an honor and privilege to serve as a NNPDF Board member. My intent in volunteering in this capacity has been to honor our daughter’s legacy and also to show my respect for all the Board members who have gone before me, creating a safe haven for my family when we received our diagnosis. My goal is to work with the current Board members, office staff and community so that the NNPDF Foundation can remain a place of refuge for all our NPD families and individuals throughout their personal journey.


Anne OConnor-Smith – Interim Treasurer
ASMD  |  Satellite Beach, FL

Anne’s Statement of Commitment:
 I am volunteering to represent the ASMD patient community and to help campaign for treatments and cures for all forms of NPD. My goal is to work with the current Board members, office staff and community to ensure the NNPDF Foundation remains a strong support system for all of our NPD families and individuals.


Missy Ward – Secretary
Mother of Adam & Amanda, NPC
Metairie, LA

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


Missy’s Statement of Commitment:  Our family joined NNPDF in 1998, after two of our children were diagnosed with this disease. My hope is to work with the other board members to continue to provide support for family members still in the battle, never losing sight of our focus to fund the research which will one day lead to a cure.




Chrystelle Bougault – NNPDF Director-at-Large

La Jolla, 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 – NNPDF Director-at-Large
Mother of Liam, NPC  |  Catharpin, VA

Liam Ferguson  |  NPC

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.


Liz Heinze – NNPDF Director-at-Large
Mother of Tyler, Katie and Faith, NPC
Elsie, MI

Tyler Heinze  |  NPC  |  05/30/97 – 12/26/05
Katie Heinze  |  NPC  |  11/21/01 – 01/22/2016
Faith Heinze  |  NPC  |  09/04/03 – 07/22/2018

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.


Becky McGuire – NNPDF Director-at-Large
Cousin of Kelly, NPC  |  Torrington, CT

Kelly Thompson  |  NPC

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. 


Darrile Papier – NNPDF Director-at-Large
Mother of Dillon, NPC  |  Frederick, MD

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


Darrile’s Statement of Commitment:  I am honored to serve as a board member and am passionate about supporting and promoting awareness and fundraising for NPD research to find a cure or treatment. Most importantly, I am committed to providing support services to individuals and families affected by the disease. As a result of the existence of the Foundation and the dedication of past and current Board members, our family received an invaluable source of emotional support along with vital information when our son Dillon was diagnosed with NPC. I want to ensure that all newly diagnosed families continue to receive the essential resources with compassion and knowledgeable understanding as well as a lifeline during a time of need and a place to share a joyful moment.

NNPDF Board Consultants (Pro Bono)


Stephen Mendel, Attorney – Legal Advisor
The Mendel Law Firm, L.P.   |  Houston, TX


Andrew Lieberman, MD
University of Michigan Medical School  |  Ann Arbor, MI


Former Members of the NNPDF Board

With great appreciation for your years of service.



Served as NNPDF Board Chairs

LisaChavezLisa Chavez – Former NNPDF Board Chair
Mother of Breann, NPC

Breann Chavez  |  NPC  |  02/10/2003 – 06/08/2006

Leslie Hughes – Former NNPDF Board Chair

Great-Aunt of Riley, NPC


Riley Corbitt  |  NPC  |  07/27/02 – 10/29/2008

Hunt Ozmer – Former NNPDF Board Chair
Father of Hunter, NPC

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

Barb Vorpahl – Former NNPDF Board Chair
Mother of Stacey, NPC


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

Served as NNPDF Board Members

Deanna Bourgeault – Former NNPDF Board Member
Mother of Kaitlyn, NPA


Kaitlyn Kay Bourgeault  |  NPA  |  07/01/2009 – 03/22/2012

RhondaBrownKehoe FC2016
Rhonda Brown-Kehoe – Former NNPDF Board Member
Mother of Graham, NPC  


Graham Kehoe  |  NPC  |  09/23/1992 – 03/16/2003

AlexandraConniffAlexandra Conniff, Ph.D. – Former NNPDF Board Member
Educator and Friend of Lee, NPC


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


SandraCowieSandra Cowie – Former NNPDF Board Member
Adult with NPB

Jill Flinton – Former NNPDF Board Member
Mother of Daniel, NPC

Daniel Flinton  |  NPC  |  12/7/2006 – 11/11/2011

MargoFreyMargo Frey – Former NNPDF Board Member
Adult with NPB  

Susan Green – Former NNPDF Board Member
Mother of Murray and Roy, NPC

SusanGreen-MurrayGreen     SusanGreen-RoyGreen

Murray Green  |  NPC  |  02/05/1978 – 10/14/1996
Roy Green  |  NPC

Lauren Grodin, Psy.D.  –  Former NNPDF Board Member
Sister of Scott, NPC


Scott Marocco  |  NPC  |  08/28/1986 – 06/06/2000

— iiiiRyanKellyRyan Kelly – Former NNPDF Board Member
Cousin of Erin, NPC


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

MelissaKingMelissa King – Former NNPDF Board Member
Mother of Lee, NPC


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

KathyLaneKathy Lane – Former NNPDF Board Member
In honor of both Grandsons, NPB

ElissaMillerElissa Miller – Former NNPDF Board Member
Mother of Jack, NPB  

Jack Visoky  |  NPB

RobinMontviloRobin K. Montvilo, R.N., Ph.D. – Former NNPDF Board Member
Friend of Graham, NPC


Graham Kehoe | NPC | 09/03/1992 – 03/16/2003

CarlWayneMooreCarl “Wayne” Moore – Former NNPDF Board Member
Uncle of Andrew and Katie, NPC

CarlWayneMoore-AndrewLimer     CarlWayneMoore-KatieLimer

Andrew Limer  |  NPC  |  04/27/1996 – 07/27/2005
Katie Limer  |  NPC  |  08/06/2005 – 08/11/2015

WaynePalmiterWayne Palmiter – Former NNPDF Board Member
Father of Rachel & Ryan, NPC  

Rachel Palmiter  |  NPC  |  12/20/1984 – 08/28/2015
Ryan Palmiter, NPC

HeatherPatenaude-TailleferHeather Patenaude-Taillefer – Former NNPDF Board Member
Mother of Monica, NPC


Monica Taillefer  |  NPC  |  08/5/2009 – 05/2/2012

DougPeaseDoug Pease – Former NNPDF Board Member
Uncle of Adam and Amanda, NPC

WARDAdam     WARDAmanda

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

Holly Roberts – Former NNPDF Board Member
Mother of Erin, NPC


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

NancySullivanNancy Sullivan – Former NNPDF Board Member
Mother of Karen, NPC


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

Brenda Teller – Former NNPDF Board Member
Mother of “Little Roy”, NPC


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

JimThompsonJim Thompson – Former NNPDF Board Member
Brother of Kelly, NPC


Kelly Thompson  |  NPC

TammyVaughanTammy Vaughan – Former NNPDF Board Member
Mother of Alex & Laura, NPC

TammyVaughanAlexVaughan       TammyVaughanLauraVaughan

Alexander David Vaughan  |  NPC  |  01/18/1988 – 12/23/1992
Laura Kathryn Margaret Vaughan  |  NPC  |  01/16/1995 – 11/08/2001

2016 NNPDF Board of Directors,
Committee Members and Central Office Staff

(From left): Front Row: Rhonda Brown-Kehoe, Margo Frey, Anne OConnor-Smith, Nicole Farhat, Missy Ward, Nadine Hill (NNPDF Executive Director) Second Row: Chris Klauer (NNPDF Family Services and Marketing Coordinator), Lisa Chavez – Board Chair, Elissa Miller-Visoky, Justin Hopkin, Wayne Palmiter, Leslie Hughes, Tammy Vaughan. NOT PICTURED: Darrile Papier

2015 NNPDF Board of Directors,
Committee Members and Central Office Staff


(From left): Front Row: Sandra Cowie, Jill Flinton, Nadine Hill (NNPDF Executive Director), Lisa Chavez, Elissa Miller, Second Row: Wayne Palmiter, Tammy Vaughan, Heather Patenaude-Taillefer, Anne OConnor-Smith, Leslie Hughes, Nicole Yanjanain-Farhat, Rhonda Brown-Kehoe, Chris Klauer (NNPDF Family Services and Marketing Coordinator), Beth Green (NNPDF Administrative Assistant) NOT PICTURED : Jim Thompson, Lauren Grodin, Becky McGuire, Darrile Papier & Ryan Kelly

2014 NNPDF Board of Directors,
Committee Members and Central Office Staff


(From left): Front Row: Rebecca McGuire, Sandra Cowie, Jill Flinton, Rhonda Brown-Kehoe, Darrile Papier, Nadine Hill (NNPDF, Executive Director), Second Row: Wayne Palmiter, Jim Thompson, Leslie Hughes, Elissa Miller-Visoky, Lisa Chavez Not pictured: Nicole Yanjanin-Farhat, Lauren Grodin, Ryan Kelly, Beth Green (Data Entry Clerk).

05/13/2019 jjb