NNPDF Board of Directors

NNPDF Board of Directors, Committee Chairs, and Staff (from left): Front row - Sandra Cowie, Jill Flinton, Robin Montvilo, Nadine Hill (NNPDF, Executive Director), Cathy Schaefer (Administrative Assistant); Second row - Rhonda Brown-Kehoe, Leslie Hughes, Becky McGuire, Nicole Yanjanin;

Third row - Lauren Grodin, Tammy Vaughan, Barb Vorpahl, Karen Quandt, Kathy Lane, Deanna Bourgeault, Lisa Chavez, Darrile Papier. Not pictured: Ryan Kelly, Brenda Teller, Beth Green (Data Entry Clerk).

NNPDF 2013 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, 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!

Karen Quandt, RN, MSN

NNPDF Board Co-Chair

Mother of Ty, NPC

Edgewood, WA

karenrq@hotmail.com

Ty Quandt, NPC

Tammy Vaughan

NNPDF Secretary

Mother of Alex

and Laura, NPC

Canadian NNPDF Rep

Ontario, Canada

tammyv@butterball.ca

Alex Vaughan

Alex Vaughan, NPC
4/18/88 - 12/23/92

Laura Vaughan, NPC
1/16/95-11/8/01

	Leslie Hughes NNPDF Board Co-Chair Great-Aunt of Riley Corbitt, NPC Wichita Falls, TX huesx2@aol.com		Riley Corbitt, NPC 7/27/02-10/29/08
	Lisa Chavez NNPDF Board Vice-Chair Mother of Breann, NPC Farmington, NM jamiandlisa@hughes.net		Breann Chavez, NPC 2/10/03 - 6/8/06

Jill Flinton
NNPDF Treasurer
Mother of Daniel, NPC
Charlton, NY
jflinton@earthlink.net

Daniel Flinton

Daniel Jonathon Flinton, NPC 12/07/06 - 11/11/11

Sandra Cowie
Director-at-Large
Adult with NPB
Toronto, Ontario, Canada
slcowie@rogers.com

Ryan Kelly

Director-at-Large

Cousin of Erin Roberts,

NPC

Hanson, MA

rkelly@alum.bryant.edu

Erin Roberts

Erin Roberts, NPC

4/5/80 - 12/1/04

Deanna Bourgeault
Director-at-Large
Mother of Kaitlyn, NPA
Indian Trail, NC
Deanna.Bourgeault@yahoo.com

Kaitlyn Bourgeault

Kaitlyn Kay Bourgeault, NPA 7/1/09 - 3/22/12

Rhonda Brown-Kehoe

Director-at-Large

Mother of Graham (NPC)

Chepachet, RI 02814

slainte23@msn.com

Graham Kehoe, NPC
9/3/92 - 3/16/03

	Kathy Lane Director-at-Large Grandmother of Collin and Cohen Parody, both NPB Dexter, NY collincohen10@yahoo.com		Collin and Cohen Parody, both NPB
	Lauren Grodin, Psy.D. Director-at-Large Sister of Scott Marocco, NPC Baltimore, MD lauren.marocco@gmail.com		Scott Marocco, NPC 8/28/86 - 6/6/00
	Becky McGuire Director-at-Large Cousin of Kelly Thompson (NPC) Torrington, CT brad.becky.mcguire@gmail.com		Kelly Thompson, NPC
	Robin K. Montvilo, R.N., Ph.D. Director-at-Large Friend of Graham Kehoe, NPC Providence, RI rmontvilo@ric.edu		Graham Kehoe, NPC 9/3/92 - 3/16/03
	Darrile Papier Director-at-Large Mother of Dillon, NPC Frederick, MD papierfamily@gmail.com		Dillon Papier, NPC

Brenda Teller
Nominations Chair
Mother of "Little Roy," NPC
Chula Vista, CA
bariasteller@cox.net

"Little Roy" Teller, NPC
2/26/90 -
12/20/03

Nicole Yanjanin, MSN, CPNP
Director-at-Large
Research Nurse
National Institutes of Health NPC Clinic
nyanjanin@mail.nih.gov

NNPDF Board Consultants (Pro Bono)

Cynthia MacLean, CPA Financial Advisor Senior Director, Finance Dept. Red Robin Gourmet Burgers Aurora, CO cynthiamaclean@comcast.net	Stephen Mendel, Attorney Legal Advisor The Mendel Law Firm, L.P. Houston, TX steve@mendellawfirm.com	Dr. Daniel Ory, M.D. Scientific Advisory Board Chair Washington University School of Medicine St. Louis, MO dory@wustl.edu
Other NNPDF Representatives and Staff

Nadine M. Hill NNPDF Executive Director P.O. Box 49 401 Madison Ave, Suite B Fort Atkinson, WI 53538 Tele: 920-563-0930 Fax: 920-563-0931 nhill@nnpdf.org	Cathy Schaefer Central Office Staff ~ Administrative Assistant nnpdf@nnpdf.org		Beth Green Central Office Staff Data Entry Specialist nnpdfoffice@idcnet.com

NNPDF 2013 Committees of the Board

Executive Committee

   Karen Quandt, Co-Chair
   Leslie Hughes, Co-Chair
   Lisa Chavez, Vice-Chair
   Jill Flinton, Treasurer

Tammy Vaughan, Secretary

   Sandra Cowie, Director-at-Large
   Ryan Kelly, Director-at-Large
   Brenda Teller, Director-at-Large
   Nadine Hill, NNPDF Executive Director (Staff Representative)

Development Committee
Lisa Chavez, Chair
Ryan Kelly, Vice-Chair

   Rhonda Brown-Kehoe
   Kathy Lane
   Becky McGuire
   Robin Montvilo
   Wayne Moore
   Rebecca Spencer White

   Karen Quandt, Board Co-Chair (Ex-Officio member)
   Leslie Hughes, Board Co-Chair (Ex-Officio Member)
   Nadine Hill, NNPDF Executive Director (Staff Representative)

Finance Committee

Jill Flinton, Chair

   Vice-Chair (tbd)
   Ryan Kelly
   Cynthia MacLean
   Art Sullivan

   Karen Quandt, Board Co-Chair (Ex-Officio member)
   Leslie Hughes, Board Co-Chair (Ex-Officio Member)
   Nadine Hill, NNPDF Executive Director (Staff Representative)

Nominations Committee

Brenda Teller, Chair

   Vice-Chair (tbd)
   Rhonda Brown-Kehoe
   Lisa Chavez

   Kathy Lane
   Becky McGuire
   Holly Roberts

Tammy Vaughan

   Karen Quandt, Board Co-Chair (Ex-Officio member)
   Leslie Hughes, Board Co-Chair (Ex-Officio Member)
   Nadine Hill, NNPDF Executive Director (Staff Representative)

Research Committee

   Sandra Cowie, Chair
   Karen Quandt, Vice-Chair
   Deanna Bourgeault
   Alexandra Conniff

   Lauren Grodin
   Toni Mathieson (Ex-Officio Member, NPD Group UK Representative)
   Leslie Hughes, Board Co-Chair (Ex-Officio Member)Robin Montvilo

   Nadine Hill, NNPDF Executive Director (Staff Representative)
   Kathy Lane
   Robin Montvilo
   Darrile Papier

Tammy Vaughan
Nicole Yanjanin

NNPDF Family Support Programs

2013 Family Conference Planning Team

   Nadine Hill, "Team" Chair
   Darrile Papier ~ Family Conference Host 2013 (Baltimore, Maryland)
   Brenda Teller ~ Childcare Activity Room Coordinator (CAR)
   Becky McGuire ~ Audio/Visual/Media Specialist
   Lisa Chavez ~ Family Representative
   Sandra Cowie ~ Family Conference Host 2010 (Toronto, Canada)

Karen Quandt ~ Family Conference Host 2009 (Seattle, Washington)
Tammy Vaughan ~ Family Conference Host 2010 (Toronto, Canada)

Former Members of the NNPDF Board (members serving since 2008 listed) ~ With great appreciation for your years of service ~ Thank You!

Alexandra Conniff, Ph.D. Educator and Friend of Lee King	Lee King (NPC) 1/13/91 - 2/26/11

Susan Green Mother of Murray and Roy Green	Murray Green (NPC) 2/5/78 - 10/14/96	Roy Green (NPC)

Melissa King Mother of Lee King	Lee King (NPC) 1/13/91 - 2/26/11

Carl "Wayne" Moore Uncle of Andrew and Katie Limer	Andrew Limer (NPC) 4/27/96 - 7/27/05	Katie Limer (NPC)

Hunt Ozmer Father of Hunter Ozmer (NPC) 6/7/85 - 1/3/08

Doug Pease Uncle of Adam and Amanda Ward	Adam Ward (NPC) 1/13/90 - 6/4/00	Amanda Ward (NPC) 11/23/94 - 12/28/04

Nancy Sullivan Mother of Karen Sullivan	Karen Sullivan (NPC) 6/27/70 - 4/12/04

Holly Roberts

Mother of Erin, NPC

Erin Roberts

Erin Roberts, NPC

4/5/80 - 12/1/04

Barb Vorpahl

Mother of Stacey, NPC

Stacey Vorpahl

Stacey Vorpahl, NPC

1/3/85 - 10/9/04

Previous Board of Directors

NNPDF Board of Directors, Committee Chairs, and Staff (from left): front row - Becky McGuire, Nicole Yanjanin, Sandra Cowie, Lisa Chavez, Robin Montvilo, Jill Flinton, Darrile Papier; second row - Toni Mathieson (NPD Group UK, Executive Director), Holly Roberts, Tammy Vaughan, Kathy Lane, Barb Vorpahl, Leslie Hughes, Karen Quandt, Nadine Hill (NNPDF, Executive Director), Deanna Bourgeault, Brenda Teller. Not pictured: Ryan Kelly, Lauren Grodin.

[Apr 4th, 2013 blg]

NNPDF Board of Directors

Thank You to our dedicated Board Members, for all you do to advance the Quest for a Cure!

NNPDF Board Consultants (Pro Bono)

NNPDF 2013 Committees of the Board