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EPI-743 Information and Resources
On Friday, June 17, 2011, representatives from Edison Pharmaceutical presented a special session to all attendees on EPI 743 during the UMDF’s Mitochondrial Medicine 2011 International Symposium in Schaumburg, Illinois. Click here to see the video presentation.
As a patient advocacy group, the UMDF continues to share information and resources about EPI-743 as well as all clinical trials that will benefit patients/families around the world. For quick reference, the UMDF worked with Edison Pharma and the principle investigators to develop a Frequently Asked Questions sheet on the new drug to distribute to families at the symposium (the FAQ sheet will be updated within the next month or so - if you have a question not addressed here, please email your question to info@umdf.org with EPI-743 FAQ in the subject line). Click here to view the FAQ sheet that was distributed at the symposium.
The UMDF and Edison Pharma staff have been working together on developing a direct line of resources to those interested in participating in the study. If you and/or an affected family member is interested in the study, please click the site closest to you for contact information. Should you be selected/approved for the study by the investigator, the UMDF has also pulled together funding/travel resources to assist you and your family.
Special thanks to Dr. Guy Miller for keeping the UMDF and the mitochondrial community informed of the exciting developments with EPI-743. We hope this information will be helpful to you!
Participating sites as of September 6, 2011
- University of California, Los Angeles, CA
- Lucile Packard Children's Hospital– Stanford University Medical Center, CA
- Akron Children's Hospital, OH
- Cleveland Clinic, OH
- Children's Hospital of Philadelphia, PA
- Columbia University, NY
- Medical University of South Carolina, SC
- Seattle Children's Hospital, WA
For Tips and Resources for Accommodations and Travel Funding,
CLICK HERE!
UNIVERSITY OF CALIFORNIA, LOS ANGELES
Investigator: Susan L. Perlman
Clinical Prof. of Neurology; Director, Ataxia Center and HD Center of Excellence
300 UCLA Med Plaza
Los Angeles, CA 90095
(310) 794-1195
Email: SPerlman@mednet.ucla.edu
Site Coordinator: Tarshia Nulliah
Phone: not available
Fax: not available
Email: not available
Los Angeles Ronald McDonald House
http://www.larmh.org/
4560 Fountain Avenue
Los Angeles, California 90029
Phone: 323.644.3000
Fax: 323.669.0552
Ronald McDonald House is one of the largest Ronald McDonald Houses in the world with 75 rooms and we have served families from every state in the country and 44 different countries around the world.
LUCILE PACKARD CHILDREN’S HOSPITAL -STANFORD
Investigator: Gregory M. Enns, MB ChB
Associate Professor and Director of Biochemical and Genetics Program
Phone: (650) 498-5798
Greg.enns@stanford.edu
Site Coordinator: Katherine Connors
700 Welch Rd, Suite 301 Palo Alto, CA 94304
Phone: 650-736-8166
Fax: 650-723-8552
Email: kconnors@stanford.edu
Hotels with Stanford patient rates found here: http://stanfordhospital.org/forPatients/lodgingFood/contractedRateHotelProgram.html
Investigator: Bruce Cohen, MD, FAAN
Director of Pediatric Neurology; Professor of Pediatrics
1 Perkins Square
Akron, OH 44308-1062
Site Coordinator: Hilary Wolf
Phone: 330-543-3193
Fax: 330-543-3166
Email: hwolf@chmca.org
Hospital Study Line: 330-543-5012 (Voice mail, will be transferred to Hilary on the next business day.)
Hospital Information:
One Perkins Square
Akron, Ohio 44308
Website : www.akronchildrens.org -or-
https://www.akronchildrens.org/cms/your_visit/ accommodations and parking info.
Local Resources: Contact Millie Sweatt, Social Worker, at 330 543-8861 for Ronald McDonald House info (pediatric and adult patients) and possible gas vouchers, if there is a financial need.
Ronald McDonald House of Akron
http://www.rmhakron.org/page/1/home
245 Locust St.
Akron, OH 44302
Phone: (330) 253-5400
Fax: (330) 253-5477
“The Ronald McDonald House of Akron was founded by families for the purpose of providing a temporary house for those who have loved ones at Akron Children’s Hospital. Many times when an overnight stay in the hospital is required, it can turn into weeks and months. Our House provides a place for the families of the sick children to conduct the basic necessities of daily life. It is a place to sleep, a place to shower and a place for a hot meal.”
Investigator: Sumit Parikh, MD
9500 Euclid Ave, S60
Cleveland, OH 44195
Phone: 216-444-1994
Fax: 216-445-9139
Site Coordinator: Diane Davies
Phone: 216-444-0173
Email: daviesd@ccf.org
Local Resources: Contact: Robin Roberts LISW...216-445-3088, Email: ROBERTR@ccf.org
Nancy Fenner LISW 216-445-6399
Email: FENNERN@ccf.org
Lodging for Cleveland Clinic: https://www.clevelandclinic.org/socialwork/lodging.htm . Includes Ronald McDonald House and Hospitality Homes, as well as hotels with reduced rates for patients.
Investigator: David Lynch, MD, PhD
Children’s Hospital of Philadelphia
3819 Chestnut Street #120
Philadelphia, PA 19104-3236
(215) 590-2242
Email: lynchd@mail.med.upenn.edu
Site Coordinator: Lauren Seyer
Phone: 267-426-9738
Fax: 267-426-0981
Email: seyerl@email.chop.edu
Local Resources: Contact Lauren Seyer for local resources.
Investigator: Michio Hirano, MD
Professor of Neurology
630 West 168th Street
New York, NY 10032
(212) 305-1048
Email: Mh29@columbia.edu
Site Coordinator: Kris Engelstad
Phone: 212-305-6834
Email: ke4@columbia.edu
Ronald McDonald House New York
http://www.rmh-newyork.org/About-Us
405 East 73rd Street
New York, NY 10021
(212) 639-0100
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MEDICAL UNIVERSITY OF SOUTH CAROLINA
Investigator: Stephen Kinsman, MD
Associate Prof. of Neurosciences, Division of Pediatric Neurology
171 Ashley Avenue
Charleston, SC 29425
(843) 792- 2707
Email: kinsmans@musc.edu
Site Coordinator: Latisha Hendry
Program Coordinator 1
Success Center
SCTR Research Support Services
Medical University of SC
125 Doughty Street Suite 100
Charleston, SC 29425
Phone: (843) 792-8300
Fax: (843) 792-6295
Email: hendryl@musc.edu
Ronald McDonald House Charities of Columbia, SC
http://rmhcofcolumbia.org/
2955 Colonial Drive
Columbia, SC 29203
Phone: 803.254.3181
Fax: 803.254.8688
The Ronald McDonald Family Room extends the comfort of the Ronald McDonald House to our local Children’s Hospital. Children of families staying at RMHC must be 21 & under. This location can accommodate 8 families at a time.
Investigator: Russell P. Saneto, DO, PhD
Associate Professor of Neurology and Pediatrics
4800 Sand Point Way
Seattle, WA 98105
(206) 987-4017
Russ.saneto@seattlechildrens.org
Site Coordinator: Laurie Guidry
Phone: 206-987-0058
Fax: 206-987-2649
Email: laurie.guidry@seattlechildrens.org
Local Resources: Contact Laurie Guidry for local resources.
Accommodation and Social Work Department info at http://www.seattlechildrens.org/visitors/neighborhood/places-to-stay/ or call 206-987-9330 or 866-987-9330 (toll-free)
Seattle Ronald McDonald House
http://www.rmhcseattle.org/content/house
5130 40th Ave NE
Seattle, WA 98105
(206) 838-0610
The Seattle Ronald McDonald House provides a caring "home-away-from-home" for families of seriously ill children being treated at Seattle Children’s. Families are asked to pay $25 a night, unless they cannot afford it. The House consists of 3 buildings, and can accommodate 80 families. More info can be found on website.