Public Interest OrganizationAllergy & Asthma Network Mothers of Asthmatics
Jennifer E. Sprinkel
Special Projects Coordinator
2751 Prosperity Ave., Suite 150
Fairfax, VA 22031
Tel: (800) 878.4403 or (703) 641.9595
Fax: (703) 573.7794
Email: jsprinkel@aanma.org
Alpha-1 Advocacy Alliance (PAR Council Member)
Ann Marie Benzinger
PO Box 202
103 Rapidan Church Lane
Wolftown, VA 22748
Email: abenzinger@aplha1advocacy.org
Alpha-1 Association
Miriam O'Day
Senior Director Public Policy
275 West Street, Suite 210
Annapolis, MD 21401
Email: moday@alpha1.org
Tel: (410) 216-6916
Fax: (410) 216-6979
Alpha-1 Association
John Morton
Chairman of the Board of Directors
4518 Arlington Street
Terra Haute, IN 47802
Email: J.P.Morton@att.net
Alpha-1 Foundation (ATS PAR Member)
John W. Walsh
2937 SW 27th Avenue, Suite 302
Miami, FL 33133
Tel: (888) 825-7421 x305
Fax: (305) 567-1317
Email: jwwalsh@alphaone.org
American Association for Respiratory Care (PAR Council Member)
Sam Giordano
Executive Director
9425 N. MacArthur Blvd. Suite 100
Irving, TX 75063-4706
Autoimmune Disease Association
Virginia Ladd
President and Executive Director
22100 Gratiot Avenue
East Detroit, MI 48021
Email: aarda@aol.com
Tel: (586)776-3900
Fax: (586) 776-3903
American Institute of Stress
Paul Rosch, M.D.
President
124 Park Avenue
Yonkers, NY 10703
Email: stress124@optonline.net
Tel: (914) 963-1200
Fax: (914) 965-6267
American Obesity Association
Morgan Downey
1250 24th Street, NW, Suite 300
Washington, DC 20037
Email: executive@obesity.org
American Sleep Apnea Association (ATS PAR Member)
Ed Grandi
Executive Director
6856 Eastern Ave, NW, Suite 203
Washington, DC 20012
Tel: (202) 293-3650
Fax: (202) 293-3656
Email: egrandi@sleepapnea.org
ARDS Foundation (ATS PAR Member)
Eileen Rubin Zacharias
3100 Dundee, Suite 402
Northbrook, IL 60062
Tel.: (312) 749-7047
Fax: (847) 272-5499
Email: info@ardsusa.org
CFIDS Association of America
Vicki Walker
Manager, Research and Public Policy Project
PO Box 220398
Charlotte, NC 28222-0398
Email: kmccleary@cfids.org
Asthma and Allergy Foundation of America (ATS PAR Member)
Charlotte Collins
1233 20th Street, NW Suite 402
Washington, DC 20036
Tel: (202) 466-7643
Fax: (202) 466-8940
E-mail: charlotte@aafa.org
Barth Syndrome Foundation, Inc.
Kate McCurdy
Vice President, Science and Medicine
12 Carleon Avenue
Larchmont, NY 10538
Email: KMcCurdy@barthsyndrome.org
Behavioral Medicine Center (PAR Council Member)
Vijai Sharma, Ph.D.
Director
2150 N. Ocoee St.
Cleveland, TN 37311
Fax: (423) 476-3334
Email: dr.sharma@mindpub.com
Caring Voice Coalition, Inc.
Catherine Valenti
Chief Executive Officer
8249 Meadowbridge Road
Mechanicsville, VA 23116
Tel: (888) 267-1440
Fax: (888) 204-3598
Email: CValenti@caringvoice.org
Caring Voice Coalition, Inc.
Pamela Harris
President
8249 Meadowbridge Road
Mechanicsville, VA 23116
Tel: (888) 267-1440
Fax: (888) 204-3598
Central Indiana Sarcoidosis Support Group (PAR Council Member)
Robbie L. Darden
Founder, President
9728 N. Mirafield Lane
McCordsville, IN 46055-9450
Email: indysarcoid@insightbb.com
Chug Strauss Syndrome Association
Jane Dion
82 Pine Ridge Rd
Montgomery, MA 01073
jd@cssassociation.org
Children’s Interstitial Lung Disease Foundation (ATS PAR Member)
Gregory R. Porta
9937 Montclaire Drive
Mason, Ohio 45040
Tel: (513) 759-7332
Fax: (513) 874-6804
Email: gporta@cinci.rr.com
Citizens for Public Action on High Blood Pressure and Cholesterol
Jerry Wilson
11900 Ledgerock Court
Potomac, MD 20854-2155
Email: libbase@aol.com
Coalition for Pulmonary Fibrosis (ATS PAR Member)
Teresa Barnes
637 S. McLean Blvd
Memphis, TN 38104
Tel: (303) 521-4080
Fax: (866) 276-8927
E-mail: tbarnes@coalitionforpf.org
Coalition for Pulmonary Fibrosis
Mark Shreve
CEO
1685 Branham Lane, Suite 227
San Jose , CA 95118
Email: info@coalitionforpf.org
COPD Coalition Hawaii (PAR Council Member)
Valerie Chang
733 Bishop St., Suite 1550
Honolulu, HI 96813
Tel: (808) 528-2889
Fax: (808) 521-1550
Email: starion06@yahoo.com
COPD Foundation
Molly McGuire
2937 SW 27th Ave Ste 302
Miami, FL 33133-3772
Email: mmcguire@alphaone.org
COPD-Alert (PAR Council Member)
Wlodzimierz Rozenbaum, Ph.D.
Founder and Administrator
3210 North Leisure World Blvd., #614
Silver Spring, MD 20906
Tel: (301) 598-6693
Fax: (301) 598-6926
Email: Vlady.Rita@verizon.net
COPD-International, COPD Council (PAR Council Member)
Pamela S. DeNardo
1741 Orchardgrove Avenue
New Port Richey, Fl 34655
Tel: 727-372-9843
Email: pam2079@aol.com
Cushing’s Support and Research Foundation, Inc.
Louise Pace
Founding President
65 East India Row, Ste. 22-B
Boston, MA 2110
Email: cushinfo@csrf.net
Cystic Fibrosis Foundation
Suzanne Pattee
6931 Arlington Road
Bethesda, MD 20814
Tel: (301) 951-4422 x 548
E-mail:spattee@cff.org
Cystic Fibrosis Foundation
Legal Information Hotline (ATS PAR Member)
Beth Sufian
811 Rusk St, Suite 712
Houston, TX 77002
Email: bethsufian@aol.com
Emphysema Foundation for Our Right to Survive (EFFORTS)
Gary Bain
President
411 Northeast US Hwy. 69
Claycomo, MO 64119
Tel: (816)452-3162
Fax: (816) 413-0174
Email: 1efforts@emphysema.net
Emphysema Foundation for Our Right to Survive (PAR Council Member)
Edna Fiore
4750 S. Dudley St, #35
Littleton, CO 80123
Tel: (720) 922-1551
Fax: (303) 984-4750
Email: ednafiore@msn.com
First Candle/SIDS Alliance
Deborah M. Boyd
Executive Director
1314 Bedford Avenue, Suite 210
Baltimore, MD 21208
Email: info@firstcandle.org
Foundation for Sarcoidosis Research (ATS PAR Member)
Debbie Durrer
President
122 South Michigan Ave, Suite 1700
Chicago, IL 60603
Tel: (312) 341-0500
Fax: (312) 322-9808
Email: Debbie@stopsarcoidosis.org
Genetic Alliance
Sharon Terry
President & CEO
4301 Connecticut Avenue, NW,
Suite 404
Washington, D.C. 20008-2369
Tel: (202) 966-5557 ext. 201
Fax: (202) 966-8553
Hermansky-Pudlak Syndrome Network (ATS PAR Member)
Donna Appell
One South Road
Oyster Bay, NY 11771-7905
Tel: (516) 922-4022
Fax: (516) 922-4022
Email: hpsnet@worldnet.att.net
Janine Sarcoidosis Foundation (PAR Council Member)
Emma Carol
12600 Bissonnet Ave
Box 477
Houston, TX 77099
Email: emma@jsof.org
LAM Foundation (ATS PAR Member)
Laura Lentz
Board of Directors
2520 Lawndale Avenue
Evanston, IL 60201
Tel: (312) 953-4280
Fax: (513) 777-4109
Email: llclentz@aol.com
LAM Treatment Alliance
Amy Farber
16 Stern St.
Cambridge, MA 02138
Tel: (617) 460-7339
Email: info@lamtreatmentalliance.org
Let’s Breathe Sarcoidosis Support (PAR Council Member)
Brenda Harris
President
910 Countrywood Drive
Zion, IL 60099
Tel: (847) 731-3110
Email: BHarris354@aol.com
Life and Breath Foundation
Sean Hull
Founder and President
10226 Tarpley Court
Elliott City, MD 21042
Tel: (410) 750-7338
Fax: (410) 750-8808
Email: srhull6@aol.com
Lung Cancer Alliance
Sarah Temin
888 16th Street NW, Suite 800
Washington, DC 20006
Tel: (202)463-2080
Fax: (202) 355-1396
Email: stemin@lungcanceralliance.org
LUNGevity Foundation
Robert M. Marovich
Executive Director
2421 North Ashland Avenue
Chicago, IL 60614
Tel: (773) 281-LUNG (5864)
Fax: (773) 281-6565
Email: rmarovich@lungevity.org
Lupus Foundation of America, Inc.
Sandra Raymond
President
2000 L Street, NW, Suite 710
Washington, DC 20036
Email: info@lupus.org
Lymphangiomatosis & Gorham’s Disease Alliance (PAR Council Member)
Jack Kelly
19919 Villa Lante Place
Boca Raton, FL33434
Tel: (561) 441-9766
Email: jayfk20@bellsouth.net
Lymphatic Research Foundation
Wendy Chaite
Founder and Executive Director
39 Pool Drive
Roslyn, NY 11576-2038
Email: WChaite@lymphaticresearch.org
Malignant Hyperthermia Association of the United States
Dianne Daugherty
Executive Director
P.O. Box 1069
39 East State Street
Sherburne, NY 13460
Email: info@mhaus.org
Narcolepsy Network
Eveline Honig
Executive Director
P.O. Box 294
Pleasantville, NY 10570
Tel: (401) 667-2523
Fax: 401)667-2523
Email: Ehonig@narcolepsynetwork.org
National Emphysema/COPD Association (PAR Council Member)
Barbara Rogers
President & Board Chair
850 Amsterdam Avenue, Suite 9A
New York, NY 10025
Tel: (212) 666-2210
Email: breethezy@aol.com
National Foundation for Transplants
Jackie D. Hancock
President
1102 Brookfield Road
Suite 200
Memphis, TN 38119
Tel: (800) 489-3863
Fax: (901) 684-1128
Email: info@transplants.org
National Lung Cancer Partnership
Regina Vidaver
222 N. Midvale Blvd, Suite 6
Madison, WI 53705
Tel: (608) 233-7905
Fax (608) 233-7893
Email: regina@NationalLungCancerPartnership.org
National Lymphedema Network, Inc.
Saskia Thaidens, R.N.
Executive Director
Latham Square
1611 Telegraph Avenue, Suite 1111
Oakland, CA 94612-2138
Email: SaskiaT@lymphnet.org
National Marfan Foundation (PAR Council Member)
Josephine Grima, Ph.D.
Vice President of Research and
Legislative Affairs
22 Manhasset Avenue
Port Washington, NY 11050
Tel: (800) 8-Marfan
Fax: (516) 883-8040
Email: JGrima@marfan.org
National Minority Organ Tissue Transplant Education Program
Gwendolyn Maddox
Executive Director
Ambulatory Care Center
2041 Georgia Avenue, NW, Suite 3100
Washington, DC 20060
Email: GMaddox@howard.edu
National Organization for Rare Disorders, Inc.
Abbey Meyers
President
PO Box 1968
55 Kenosia Avenue
Danbury, CT 06813-1968
Email: ameyers@rarediseases.org
National Sarcoidosis Networking Society of America, Inc.
Glenda Fulton
Founder
P.O. Box 21334
Chicago, IL 60621
Email: sarcoidosis2@hotmail.com
National Sarcoidosis Resource Center
Sandra Conroy
P.O. Box 1593
Piscataway, NJ 08855-1593
Tel: (732) 699-0733
Email: SConroy846@aol.com
National Sleep Foundation
Richard Gelula
1522 K Street, NW, Suite 500
Washington, DC 20005
Tel: (202) 347-3471 x 212
Fax: (202) 347-3472
Email: rgelula@sleepfoundation.org
NTM Info and Research (PAR Council Member)
Samantha Castronovo
1550 Madruga Ave, Suite 230
Coral Gables, FL 33146
Tel: (305) 667-6461
Fax: (305) 662-8035
Email: scastronovo@ntminfo.org
Parent Project Muscular Sys trophy
Pat Furlong
Founding President and CEO
1012 North University Blvd.
Middletown, Ohio 45042
Email: Pat@parentprojectmd.org
Primary Ciliary Dyskinesia Foundation (PAR Council Member)
Michele Manion
President
29252 N. 22nd Lane
Phoenix, Az 85085
Tel: (623) 215-6670
Fax: (623) 215-6670
Email: michelemanion@gmail.com
Pediatric Network for Chronic Fatigue Syndrome, Fibromyalgia and Orthostatic Intolerance
Rebecca Moore
Co-founder
21 Hudson Drive
Hyde Park, NY 12538
Email: rebecca@pediatricnetwork.org
Pediatric/Adolescent Gatroesophageal Reflux Association
Beth Anderson
Director
P.O. Box 486
Buckeystown, MD 21717-0486
Email: gergroup@aol.com
Progeria Research Foundation, Inc.
Audrey Gordon
President
PO Box 3453
Peabody, MA 01961-3453
Fax: (978) 535-5849
Email: info@progeriaresearch.org
Pulmonary Fibrosis Foundation
Michael Rosenzweig, Ph.D.
President
1332 North Halsted Street Suite 201
Chicago, IL 60622
Tel: (312) 587-9272
Fax: (312) 587-9273
Email: breathe@pulmonaryfibrosis.org
Pulmonary Hypertension Association
Rino Aldrighetti
President
850 Sligo Ave, #800
Silver Spring, MD 20910
Email: rino@phassociation.org
Pulmonary Hypertension Association, Inc. (ATS PAR Member)
Judith Simpson
84 Bandy Drive
Holiday Island, AR 72631
Tel: 479-253-0082
Fax: same as phone
Email: ejsimpson@cox.net
PXE International
Sharon Terry
Executive Director
4301 Connecticut Ave. NW, Suite 404
Washington, DC 20008-2369
Email: sterry@pxe.org
Respiratory Health Association of Metropolitan Chicago (ATS PAR Member)
Willard A. Fry, MD
1111 Sunset Road
Winnetka, IL 60093
Tel: (847) 446-1979
Fax: (847) 784-8914
Email: w-fry@northwestern.edu
Restless Legs Syndrome Foundation
Georgianna Bell
Executive Director
819 Second Street SW
Rochester, MN 55902-2985
Email: RLSFoundation@rls.org
Sarcoid Networking Association
Dolores O'Leary
Director
6424 151st Avenue, East
Sumner, WA 98390-2601
Tel: (253) 826-7737
Email: sarcoidosis_network@prodigy.net
Sarcoidosis Awareness Network
Linda Lanier
President
10313 Farrar Avenue
Cheltenham, MD 20623
Email: info@sarcoidosisnetwork.info
Sarcoidosis Network Foundation
Ruth Jacobs
President
11428 East Artesia Boulevard
Suite 10
Artesia, CA 90201
Email: reachsnf@msn.com
Sarcoidosis of the Midlands of South Carolina (PAR Council Member)
Eddie Glenn Bryant, Ph.D.
Founder
P.O. Box 1852
Columbia, SC 29202
Email: glenn3605@bellsouth.net
Sarcoidosis Online Sites
Kelly Lloyd
Co-founder
P.O. Box 150549
Cape Coral, FL 33915
Email: webmaster@sarcoidosisonlinesites.com
Sarcoidosis Research Institute
Paula Y. Polite
3475 Central Avenue
Memphis, TN 38111
Tel: (901) 381-4776
Fax: 901-774-7294
E-mail: ppolite@midsouth.rr.com
Sarcoidosis Support Group of Greater Washington
Sheila Clark
Coordinator
1639F Carriage House Terrace
Silver Spring, MD 20904
Email: Sheila.Clark@uspto.gov
Scleroderma Foundation
Adrienne Oleck
Director of Legislative Affairs
1747 Pennsylvania Avenue
Suite 1150
Washington, DC 20006
Email: aoleck@scleroderma.org
Second Wind (PAR Council Member)
Mike Parker
7308 Flower Ave
Tacoma Park, MD 20912
Tel: (902) 654-2207
Email: mparker79@comcast.com
Systemic Lupus Erythematosus Foundation
Richard DeScherer
President
149 Madison Avenue, Suite 205
New York, NY 10016
Email: lupus@lupusny.org
The Noonan Syndrome Support Group, Inc.
Wanda Robinson
President
PO Box 145
Upperco, MD 21155
Email: wandar@bellatlantic.net
Temporomandibular Joint Disease Association
Terrie Cowley
President
P.O. Box 26770
Milwaukee, WI 53226
Fax: (262) 432-0375
Email: info@tmj.org
TOPS Club, Inc.
Barbara Cady
President
1813 Ryan Road
Fairmont, WV 26554-9268
Email: BCady290@aol.com
Transplant Recipients International Organization
Pam Skarda
Managing Director
2117 L Street, NW, Suite 353
Washington, DC 20037
Email: PSkardaTRIO@aol.com
Tuberous Sclerosis Alliance (ATS PAR Member)
Vicky Whittemore, Ph.D.
VP & Director of Science
801 Roeder Road, Suite 750
Silver Spring, MD 20910
Tel: (301) 562- 9890
Fax: (301) 562-9870
Email: vwhittemore@tsalliance.org
Vasculitis Foundation (PAR Council Member)
Joyce A. Kullman
Executive Director
PO Box 28660
7 NW 72nd Street
Kansas City, MO 64188-8660
Email: jakullman@vasculitisfoundation.org
| 
