Lysosomal Diseases

Advocacy & Support Groups

**These patient advocacy groups provided formal letters of support for the Lysosomal Disease Network’s 2014 NIH grant application.

❖These patient advocacy groups are affiliated with the Lysosomal Disease Network.

North America

Acid Maltase Deficiency Association (AMDA)
Tiffany House, President
P.O. Box 700248-0248
San Antonio, Texas 78270, USA
Tel. (210) 494-6144
Email: AMDA President
Website: http://www.amda-pompe.org

Addi & Cassi Fund
(For Niemann-Pick disease type C)
59 Damonte Ranch Parkway
Suite B360
Reno, NV 89511, USA
Tel. (800) 517-2542
Website: Addi & Cassi Fund

Adrenoleukodystrophy Foundation
David A. Cry, CEO
241 Camden Street
Slidell, LA 70461, USA
Tel. (985) 718-4728
Email: information@nullaldfoundation.org
Website: http://aldfoundation.org

The Ara Parseghian Medical Research Foundation
(For Niemann-Pick disease type C)
Sean Kassen, PhD, Director
The Ara Parseghian Medical Research Fund
University of Notre Dame
Office of the Dean
215 Jordan Hall of Science
Notre Dame, IN 46556-4618, USA
Tel (574) 631-4689
Email: Director of the Ara Parseghian Medical Research Foundation
Website: The Ara Parseghian Medical Research Foundation

Association for Glycogen Storage Disease (AGSD)
Iris Ferrecchia, President
P.O. Box 896
Durant, IA 52747, USA
Tel. (563) 514-4022
Email: President of the AGSD
Website: http://www.agsdus.org/

Batten Disease Support and Research Association (BDSRA)
Margie Frazier, PhD, Executive Director
1175 Dublin Road
Columbus, OH 43215, USA
Tel. (800) 448-4570
Email: Executive Director of the BDSRA
Website: http://www.bdsra.org/

Ben’s Dream Sanfilippo Research Foundation
Stuart & Jennifer Siedman
P.O. Box 81268
Wellesley, MA 02481-0002, USA
Tel. (617) 899-4158
Email: contact@nullbensdream.org
Website: http://bensdream.org/

Canadian Association of Pompe (Association Canadienne de Pompe)
Brad Crittenden, President
112-3201 Wilson Street
Penticton, BC
Canada V2A 8J3
Email: Brad Crittenden
Website: http://www.pompecanada.com/

Canadian Fabry Association
Gina Costantino, President
Donna Strauss, Executive Director
52 Glen Forest Drive
Hamilton, ON
Canada L8K 5V8
Email: Executive Director of the Canadian Fabry Association
Website: http://www.fabrycanada.com/

**❖The Canadian MPS Society (The Canadian Society for Mucopolysaccharide & Related Diseases Inc.)
Jill Ley, Interim Manager
#218-2055 Commercial Drive
Vancouver, BC
Canada V5N 0C7
Tel. (800) 667-1846 or (604) 924-5130
Email: Jill Ley, Interim Manager
Website: http://www.mpssociety.ca

The Charlotte and Gwenyth Gray Foundation
c/o The Giving Back Fund
5757 W. Century Blvd., Suite 410
Los Angeles, CA 90045, USA
Tel. (310) 649-5222
Email: The Charlotte & Gwenyth Gray Foundation
Website: www.curebatten.org

Children’s Gaucher Research Fund
Greg Macres
8110 Warren Court
Granite Bay, CA 95746, USA
Tel. (916) 797-3700
Email: research@nullchildrensgaucher.org
Website: http://www.childrensgaucher.org/

Chloe’s Fight Rare Disease Foundation
(For metachromatic leukodystrophy)
Erica Barnes, Co-founder & Chair of the Board of Directors
343 Sweet Briar Lane
Hopkins, MN 55343, USA
Tel. (952) 457-6956
Email: Chloe’s Fight Rare Disease Foundation
Website: Chloe’s Fight

Cure GM1 Foundation
Christine Waggoner, Founder
P.O. Box 6890
Albany, CA 94706, USA
Email: Christine Waggoner
Website: Cure GM1 Foundation

Cure Sanfilippo Foundation
Glenn O’Neill, President
P.O. Box 6901
Columbia, SC 29260, USA
Tel. (803) 413-0525
Email: Glenn O’Neill
Website: Cure Sanfilippo Foundation

Cure Tay-Sachs Foundation
Rick Karl, President
12730 Triskett Road
Cleveland, OH 44111, USA
Tel. (562) 212-1071
Email: Rick Karl
Website: Cure Tay-Sachs Foundation

The Cystinosis Foundation
Valerie Hotz, Executive Director
58 Miramonte Drive
Moraga, CA 94556, USA
Tel. (888) 631-1588 or (925) 631-1588
Email: Cystinosis Foundation Executive Director
Website: http://www.cystinosis.com/

Cystinosis Research Foundation
Nancy Stack, President and Founding Trustee
18802 Bardeen Avenue
Irvine, CA 92612, USA
Tel. (949) 223-7610
Email: Contact the Cystinosis Research Foundation
Website: Cystinosis Research Foundation

Cystinosis Research Network
Christy Greeley, Executive Director
302 Whytegate Court
Lake Forest, IL 60045, USA
Tel. (847) 735-0471 or (866) 276-3669
Email: info@nullcystinosis.org
Website: https://cystinosis.org/

**❖Fabry Support and Information Group
Jack Johnson, Founder and Executive Director
108 NE 2nd Street, Suite C
P.O. Box 510
Concordia, MO 64020, USA
Tel. (660) 463-1355, Fax: (660) 463-1356
Email: Fabry Support & Information Group Executive Director
Website: http://www.fabry.org/FSIG.nsf

Hide and Seek Foundation
(For Niemann-Pick disease type C)
Stephanie Lyn
6475 Pacific Coast Highway, Suite 466
Long Beach, CA 90803, USA
Tel. (877) 621-1122 or (562) 621-0022
Email: Stephanie@nullhideandseek.org
Website: http://www.hideandseek.org

**❖Hunter’s Hope Foundation
(For Krabbe disease)
Jacque Waggoner, Chief Executive Officer
6368 West Quaker Street
P.O. Box 643
Orchard Park, NY 14127, USA
Tel. (716) 667-1200
Email: info@nullhuntershope.org
Website: Hunter’s Hope Foundation

The Isaac Foundation
(For MPS diseases)
Alexandra Hall, Managing Director
5291 County Rd. 30
Campbellford, Ontario
Canada K0L 1L0
Tel. (613) 328-9136
Email: Alexandra Hall
Website: The Isaac Foundation

Jonah’s Just Begun – Foundation to Cure Sanfilippo, Inc.
(For Sanfilippo syndrome type C, a.k.a. MPS IIIC)
Jeremy Weishaar, President
Jill Wood, Treasurer
P.O. Box 150057
Brooklyn, NY 11215, USA
Tel. (347) 831-0246
Email for Patient Outreach: Jill Wood
Email for All Other Inquiries: Jonah’s Just Begun Admin
Websites: Jonah’s Just Begun
Jonah’s Just Begun on FaceBook

LAL Solace (Support Organization for LAL deficiency – Advocacy, Care and Expertise)
(For lysosomal acid lipase deficiency, a.k.a. LAL deficiency / Wolman disease / cholesteryl ester storage disease (CESD))
Brett Billmeyer, Executive Director
Minnesota, USA
Email: Brett Billmeyer at LAL Solace
Website: http://www.lalsolace.org/

The Legacy of Angels Foundation
(For Krabbe disease & cystic fibrosis)
(The Legacy of Angels Foundation is a private grant-making organization with a
preference for leveraged, strategic funding. Applications are by invitation only.)
Paul Rosenau, President and Co-Founder
Stacy Pike, Director of Programs and Administration
P.O. Box 1014
Prior Lake, MN 55372, USA
Email: Stacy Pike
Website: The Legacy of Angels Foundation

**❖MLD Foundation
(For metachromatic leukodystrophy)
Teryn Suhr, Executive Director; Dean Suhr, President & Board Chairperson
21345 Miles Drive
West Linn, OR 97068-2878, USA
Tel. (800) 617-8387 or (503) 656-4808
Email: MLDinfo@nullmldfoundation.org
Website: MLD Foundation

**❖Mucolipidosis Type IV Foundation (ML4 Foundation)
Rebecca Oberman, Executive Director
3500 Piedmont RD, Suite 500
Atlanta, GA 30305, USA
Tel. (877) 654-5459
Email: info@nullml4.org
Website: http://www.ml4.org

National Fabry Disease Foundation
Jerry Walter, Founder and President
4301 Connecticut Ave. N.W.
Suite 404
Washington D.C. 20008, USA
Tel. (800) 651-9131
Email: info@nullfabrydisease.org
Website: http://www.fabrydisease.org

**❖National Gaucher Foundation
Amy Blum, Executive Director
5410 Edson Lane, #220
Rockville, MD 20852, USA
Tel. (800) 504-3189
Email: National Gaucher Foundation
Website: http://www.gaucherdisease.org/

National Gaucher Foundation of Canada
Christine White, President
83 Winnegreen Court
Ottawa, Ontario
Canada K1G 5S3
Tel. (613) 867-6344
Email: National Gaucher Foundation of Canada President
Website: http://www.gauchercanada.ca/

**❖National MPS Society
Mark Dant, President and CEO
4220 Apex Highway, Suite 140
Durham, NC 27713-5295, USA
Tel. (919) 806-0101,  Fax: (919) 806-2055
Email: National MPS Society
Website: http://www.mpssociety.org/

National Niemann-Pick Disease Foundation
Chris Klauer, Interim Manager
P.O. Box 49
401 Madison Ave, Ste. B
Ft. Atkinson, WI 53538, USA
Tel. (920) 563-0930 or (877) 287-3672, Fax (920) 563-0931
Email: nnpdf@nullnnpdf.org
Website: http://www.nnpdf.org

**❖National Tay-Sachs and Allied Diseases Association Inc.
Susan Kahn, Executive Director
2001 Beacon Street, Suite 204
Brighton, MA 02135, USA
Tel. (800) 906-8723,  Fax (617) 277-0134
Email: National Tay-Sachs and Allied Diseases Association
Website: http://www.ntsad.org/

New Hope Research Foundation
(For adult-onset Tay-Sachs disease)
Jack Keimel, President
6 Charley Lake Court
North Oaks, MN 55127-6219, USA
Tel. (763) 526-8064
Email: contact@nullNewHopeResearch.org
Website: http://newhoperesearch.org/

New Jersey Rare Disease Alliance
W.E. “Bill” Cummings, Jr., Committee Member
New Jersey, USA
Tel. (781) 249-9773
Email: New Jersey Rare Disease Alliance Admin
Website: http://www.njrarediseasealliance.org/

Quebec Coalition of Orphan Diseases
Regroupement québécois des maladies orphelines (RQMO)
Gail Ouellette, PhD, Executive Director
110, avenue des Pins Ouest
Montréal (Québec)
Canada H2W 1R7
Tel. (819) 543-0550
Email: info@nullrqmo.org
Website: http://rqmo.org/

The Quinn Madeleine Foundation
Eileen Linzer, Co-Founder & Executive Director
Quinn Madeleine Inc.
P.O. Box 721
Lynbrook, NY 11563, USA
Tel. (516) 206-2155
Email: Executive Director of the Quinn Madeleine Foundation
Website: The Quinn Madeleine Foundation

**❖The Ryan Foundation
Jeanne Dant, Volunteer Executive Director
2025 Jackson Road
Carrollton, TX 75006, USA
Tel. (214) 870-7926
Email: The Ryan Foundation Executive Director
Website: The Ryan Foundation

Sanfilippo Foundation for Children
Roy Zeighami, Executive Director/Founder
6420 Diamond DR
Mckinney, TX 75070, USA
Email: contact@nullsf4k.org
Website: http://sf4k.org/

Taylor’s Tale
Sharon King, President
7804 Fairview Road, Box 135
Charlotte, NC 28226-4998, USA
Email: Sharon King
Website: Taylor’s Tale

United Leukodystrophy Foundation
Bobbi Burgstone, Executive Director
224 North Second Street, Suite 2
DeKalb, IL 60115-3293, USA
Tel. (800) 728-5483 or (815) 748-3211
Email: United Leukodystrophy Foundation Executive Director
Website: http://ulf.org/

United MSD Foundation, Inc.
(For multiple sulfatase deficiency)
Amber Olsen
P.O. Box 929
Ocean Springs, MS 39566-9982, USA
Tel. (228) 327-6916
Email: United MSD Foundation
Website: Warriors for Willow / United MSD Foundation

**❖United Pompe Foundation
David W. Hamlin
5100 N. Sixth Street, #119
Fresno, CA 93710, USA
Tel. (559) 227-1898, Fax (559) 227-1898
Email: United Pompe Foundation Admin
Website: http://www.unitedpompe.com

**These patient advocacy groups provided formal letters of support for the Lysosomal Disease Network’s 2014 NIH grant application.

❖These patient advocacy groups are affiliated with the Lysosomal Disease Network.

The listing of any external web page on the Lysosomal Disease Network web site does not imply or express any endorsement or guarantee of the information presented on that external web page.

Australia and New Zealand

Australasian Leukodystrophy Foundation
Bob Wyborn, President and Founder
P.O. Box 209
Clontarf Beach 4019
Queensland
Australia
Tel. 61-7-3283 7224
Email: Bob Wyborn
Website: Australasian Leukodystrophy Foundation

Australian Battens Support Group
Harry Partridge, President
9 Norton Avenue
Killarney Vale
NSW 2261
Australia
Email: info@nullbattens.org.au
Website: http://www.battens.org.au

The Australian MPS Society (Mucopolysaccharide & Related Diseases Society Aust. Ltd.)
Vanessa Ede-Scott, Board President
P.O. Box 131
Heidelberg, VIC 3084
Australia
Tel. 1800 045 515
Email: info@nullmpssociety.org.au
Website: http://www.mpssociety.org.au

Fabry Australia Inc.
Megan Fookes, President
P.O. Box 106 Mentone
Mentone, 3194
Australia
Tel. +61 (0)422 201 013
Email: secretary@nullfabry.com.au
Website: https://www.fabry.com.au/

ISMRD — International Advocate for Glycoprotein Storage Diseases
(International Society of Mannosidosis and Related Diseases)
Jenny Noble, Vice President & Administrator
167 Hollister Lane
Ohauiti, Tauranga
New Zealand
Tel. 64 7 5448868 / 64 021 548318
Email: Jenny Noble
Website: ISMRD

Leukodystrophy Resource and Research Organisation Inc.
Bob Wyborn, President and Founder
P.O. Box 209
Clontarf Beach 4019
Queensland
Australia
Tel. 61-7-3283 7224
Email: Bob Wyborn
Website: Leukodystrophy Resource and Research Organisation Inc.

Lysosomal Diseases New Zealand (The New Zealand Lysosomal Storage Diseases Trust)
John Forman, Chairperson
125 Cuba Street
Petone
Lower Hutt City
New Zealand
Tel. 04 566 7707
Email: Lysosomal Diseases New Zealand Chairperson
Website: http://www.ldnz.org.nz/home

New Zealand Organisation for Rare Disorders (NZORD)
Letitia O’Dwyer, Chief Executive
P.O. Box 38-538
Wellington Mail Centre
Wellington, New Zealand 5045
Tel. 64 4 471 2226
Email: enquiries@nullnzord.org.nz
Website: http://www.nzord.org.nz/

Sanfilippo Children’s Foundation
P.O. Box 475
Freshwater NSW 2096
Australia
Tel. 1800 664 878
Email: info@nullsanfilippo.org.au
Website: http://www.sanfilippo.org.au/

Europe

Fabry International Network
Christine Lavery, President
Jack Johnson, Vice President
Administrative location: Amersham, United Kingdom
Website: http://www.fabrynetwork.org/

Genetic & Rare Disorders Organisation (in Ireland)
C/O Fighting Blindness
3rd Floor, 7 Ely Place
Dublin 2, Ireland
Tel. 086 0229262
E-mail: info@nullgrdo.ie
Website: Genetic & Rare Disorders Organisation

MSD Action Foundation (in Ireland)
(For multiple sulfatase deficiency)
Alan Finglas, Co-Founder
MSD Action Foundation
c/o Grattan Lodge
Balgriffin, Dublin 13, Ireland
Email: Alan Finglas
Website: MSD Action Foundation

German MPS Society (Gesellschaft für Mukopolysaccharidosen e.V.)
Herstallstraße 35
63739 Aschaffenburg
Deutschland
Tel. 0 60 21 – 85 83 73, Fax 0 60 21 – 85 83 72
Email: info@nullmps-ev.de
Website: http://mps-ev.de/mps/

German NCL (Batten Disease) Society (NCL-Gruppe Deutschland e.V.)
NCL-Gruppe Deutschland e.V.
Chairperson: Iris Dyck
Hermann-Piper-Straße 8
13403 Berlin
Deutschland
Tel. 030 / 411 26 19
E-mail: German NCL Society Chairperson
Website: http://www.ncl-deutschland.de/home.html

Italian MPS Society (Associazione italiana mucopolisaccaridosi e malattie affini – Onlus)
Flavio Bertoglio, President
Via Volta, 291 – 20030 Senago (MI)
Milan, Italy
Tel. 39 02.99010188, Fax 39 02.99486016
Email: staff@nullaimps.it
Website: http://www.mucopolisaccaridosi.it/ENGLISH-INDEX.htm

French Lysosomal Diseases Society (Vaincre Les Maladies Lysosomales)
2 ter avenue de France
91300 MASSY
France
Tel. 01 69 75 40 30, Fax 01 69 36 93 50
Website: http://www.vml-asso.org/

South Africa

Gaucher and LSD Society of South Africa (GLSDSA)
Kelly du Plessis, Executive Director
Juile 37, Private Bag X2
Danfern, Johannesburg 2055
South Africa
Email: Gaucher & LSD Society of South Africa Executive Director
Website: GLSDSA on FaceBook

South America

Brazilian MPS Association (APMPS – Associação Paulista de Mucopolissacaridoses)
Regina Próspero, President
Located in São Paulo, Brasil
Tel. (11) 2414-3060
Email: apmps@nullapmps.org.br
Website: www.apmps.org.br/site/index.php

United Kingdom

The Association for Glycogen Storage Disease (UK) Limited (AGSD-UK)
Michael Porter, Chairperson
Correspondence Address:
Old Hambledon Racecourse, Sheardley Lane
Droxford, SO32 3QY
UK
Tel. 0300 123 2790 and 0300 123 2799
Email: Association for Glycogen Storage Disease (UK) Chairperson
Website: http://www.agsd.org.uk/

Batten Disease Family Association (BDFA)
Andrea West, Chief Executive
The Old Library, 4 Boundary Road
Farnborough, Hants
GU14 6SF
UK
Tel. 01252 416323
Email: admin@nullbdfa-uk.org.uk
Website: http://www.bdfa-uk.org.uk/

CLIMB – Children Living with Inherited Metabolic Diseases
Climb Building
176 Nantwich Road, Crewe
Cheshire CW2 6NG
UK
Tel. 0845 241 2173, Fax 01270 250244
Email: contact@nullclimb.org.uk
Website: http://www.climb.org.uk

MLD Support Association UK
(For metachromatic leukodystrophy)
Jackie Imrie
Floor 5, Amphenol Business Complex
Thanet Way, Whitstable
United Kingdom CT5 3SB
Tel. 07836 627485 / 07977 440809
Email: admin@nullmldsupportuk.org.uk
Website: MLD Support Association UK

Niemann-Pick Disease Group (UK)
Toni Mathieson, Executive Director
Suite 2, Vermont House, Concord, Washington
Tyne and Wear, NE37 2SQ
UK
Tel. 0191 415 0693 and 0191 416 1207
Email: info@nullniemann-pick.org.uk
Website: http://www.niemannpick.org.uk

The Society for Mucopolysaccharide Diseases (UK)
Christine Lavery, Director
MPS House, Repton Place, White Lion Road
Amersham, Buckinghamshire, HP7 9LP
UK
Tel. 0345 389 9901, Fax 0345 389 9902
Email: info@nullmpssociety.org.uk
Website: http://www.mpssociety.org.uk/en/

The listing of any external web page on the Lysosomal Disease Network web site does not imply or express any endorsement or guarantee of the information presented on that external web page.

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