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NNPDF Board of Directors

NNPDF Board of Directors


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2016 BOARD OF DIRECTORS
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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, etc.  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!
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2016 Board of Directors PHOTO

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) Back Row – Chris Klauer (NNPDF Family Services and Marketing Coordinator), Lisa Chavez, Elissa Miller, Justin Hopkin, Wayne Palmiter, Leslie Hughes, Tammy Vaughan Not pictured: Jill Flinton

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NNPDF 2016 EXECUTIVE COMMITTEE

   

LisaChavezLisa Chavez – NNPDF Board Chair
Mother of Breann, NPC  |  Farmington, NM  |  jamiandlisa@hughes.net

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

 

Lisa’s Statement of Commitment ~ “I’ve been a member or the NNPDF Board for the past 5 years. 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.”


   

WaynePalmiterWayne Palmiter – NNPDF Board Vice Chair
Father of Rachel & Ryan, NPC  |  Gresham, OR   |  w.palmiter@comcast.net

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

 

Wayne’s Statement of Commitment  ~ “This is my third year as a member of the NNPDF Board.  I volunteered to serve on the Board as a way to give back to the NNPDF for its ongoing support of our family, and to provide advocacy for adult NPC patients and their families.  Our daughter Rachel lost her fight with NPC in 2015 at the age of 30, and our 27 year old son Ryan continues to battle NPC.  It is because of them, and all the others who bravely confront Niemann-Pick disease each day, that I am inspired to continue to serve the NPD community in support of the NNPDF mission.”


   

AnneOconnorSmithAnne OConnor-Smith – NNPDF Treasurer
Adult with NPB  |  Satellite Beach, FL  |  aoconnor@gmail.com

Anne’s Statement of Commitment ~ “I’ve been a NNPDF Board member for the past year. 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.”


   

TammyVaughanTammy Vaughan – NNPDF Secretary
Mother of Alex & Laura, NPC
Durham, ON Canada   |  tammyV@butterball.ca

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

   

JustinHopkinJustin Hopkin – NNPDF Director-at-Large
Father of Garrett, ASMD   |  Lander, WY   |  hopkin@wyoming.com

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 roll as the center for information sharing for NPD.”


NNPDF 2016 DIRECTORS-AT-LARGE

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RhondaBrownKehoe FC2016Rhonda Brown-Kehoe – NNPDF Director-at-Large
Mother of Graham, NPC  |  Foster, RI  |  slainte23@msn.com

RhondaBrownKehoeGraham

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

    

JillFlinton2Jill Flinton – NNPDF Director-at-Large
Mother of Daniel, NPC  |  Charlton, NY  |  jflinton@earthlink.net

JillFlintonDanielFlinton

Daniel Jonathon Flinton  |  NPC  |  12/07/2006 – 11/11/2011

 

Jill’s Statement of Commitment  ~ “I volunteer to remember my son Dan, and to provide financial experience to the NNPDF.”


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MargoFreyMargo Frey – NNPDF Director-at-Large
Adult with NPB  |  Newfoundland, NJ   |  margofreyy55@gmail.com

Margo’s Statement of Commitment ~ “I was recently elected to the NNPDF Board and look forward to serving this community in this capacity.  As an adult (and sister of one) diagnosed with NPD-B many years before this foundation was formed, I appreciate the support the Foundation provides to individuals and families affected by NPD and the support and promotion of research leading to treatment options.  My intent in volunteering in this capacity is to give back to the Foundation by being part of the team that will ensure its continuity to enable achievement of its vision and mission.   I will support the needs of the NNPDF leadership team so that NNPDF remains a resource of support and hope for those affected by NPD.”


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ElissaMillerElissa Miller – NNPDF Director-at-Large
Mother of Jack, NPB  |  Marlboro, NJ   |  elissapsydd@aol.com

ElissaMillerJackVisoky
Jack Visoky  |  NPB

 

Elissa’s Statement of Commitment ~ “I have been a member or the NNPDF Board for the past 2.5 years. My intent in volunteering in this capacity has been to honor my son, Jack, who suffers from Niemann Pick, Type B, 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. My goal is to also work to the best of my ability to help fund and promote research for treatments and eventually a cure for all NPD patients.”


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DarrilePapierDarrile Papier – NNPDF Director-at-Large
Mother of Dillon, NPC  |  Frederick, MD  |  papierfamily@gmail.com

DarrilePapierDillon
Dillon Papier  |  NPC

 

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 10 years ago. 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.”


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MissyWard_000Missy Ward – NNPDF Director-at-Large
Mother of Adam & Amanda, NPC
Metairie, LA   |  missy521@bellsouth.net

WARDAdam     WARDAmanda

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

 

Missy’s Statement of Commitment ~ “I am one of the newest members of the NNPDF Board. 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.”



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NNPDF Board Consultants (Pro Bono)

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StephenMendel
Stephen Mendel, Attorney – Legal Advisor
The Mendel Law Firm, L.P.   |  Houston, TX
steve@mendellawfirm.com

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AndrewLieberman
Andrew Lieberman, M.D.
University of Michigan Medical School  |  Ann Arbor, MI
liebermn@umich.edu




NNPDF Staff
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chris
Chris Klauer
NNPDF Family Support & Marketing Coordinator

nnpdf@nnpdf.org

jill
Jill Beirl
NNPDF Administrative Assistant/Data Entry Specialist

jbeirl@nnpdf.org

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 fORMER

Former Members of the NNPDF Board


With great appreciation for your years of service.

THANK YOU!

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Served as NNPDF Board Chairs

LeslieHughes
Leslie Hughes – Former NNPDF Board Chair

Great-Aunt of Riley, NPC

LeslieHughesRileyCorbitt

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

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

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

Karen Quandt
Karen Quandt, RN, MSN – Former NNPDF Board Chair
Mother of Ty, NPC
(Photo unavailable per former member’s request)

TyQuandt

Ty Quandt  |  NPC

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

BarbVorpahl-Stacey

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


Served as NNPDF Board Members


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

DeannaBourgeault-Kaitlyn

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

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

AlexandraConniff-LeeKing

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

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SandraCowieSandra Cowie – Former NNPDF Board Member
Adult with NPB


SusanGreen
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


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

LaurenGrodin-ScottMarocco

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

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

RyanKelly-Erin

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

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

AlexandraConniff-LeeKing

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

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


BeckyMcGuireBecky McGuire – Former NNPDF Board Member
Cousin of Kelly, NPC

BeckyMcGuire-KellyThompson_000

Kelly Thompson  |  NPC

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

RhondaBrownKehoeGraham

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

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

HeatherPatenaude-MONICA

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

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

RyanKelly-Erin

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

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

NancySullivan-KarenSullivan

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

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

BrendaTeller-LittleRoy

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

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

BeckyMcGuire-KellyThompson_000

Kelly Thompson  |  NPC


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

BoardPhoto2015

(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

2014BoardofDirectors_001

(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).

09/07/2016 jjb