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So Much/So FastSo Much/So Fast
West City Films, 2007. DVD, 87 minutes (Documentary)
www.somuchsofast.com

Stephen Heywood finds out that he has ALS (also known as Lou Gehrig's disease) at the age of 29. So Much/So Fast is a documentary that follows Stephen on his journey as the disease robs him of the use of his muscles and voice and ultimately forces him to use a respirator just to breathe.

Stephen's brother Jamie becomes obsessed with finding a cure. He quits his job and forms a foundation (ALS Therapy Development Institute) dedicated to ALS research. Jamie drives home the point that the medical establishment has no concept of the lack of time in these families' lives. According to the film, the foundation ran one of the largest mouse labs for studying ALS. So much of the foundation's resources go to research that at one point there is less than $500 in the bank with insolvency close at hand. Jamie is able to rally funds to keep going but at a large personal cost--eventually sacrificing his marriage.

Stephen carries on with a positive attitude and love from all of his friends and family. One of Stephen's friends helps run the foundation, another friend works in the research lab trying to find a cure for ALS. A third brother, Ben, is also very close; though he lives far he joins his brothers for weekly videogames via phone. Stephen's wife married him after he received his diagnosis and she never wavers. Stephen admits that he wants to see his young son grow and so chooses a respirator when he can no longer breathe on his own. One can even see the affection of film directors Steven Ascher and Jeanne Jordan for Stephen and his family--Jordan also lost a family member to ALS.

The film shows some of the technology that is needed to adapt to life with ALS. Stephen is seen using a speech communication device as well as trying Brain Gate, a program that allows one to manipulate the computer with their thoughts. Christopher Reeve is also shown briefly addressing a neuroscientist meeting. Reeve's message that science needs to take risks and move forward more quickly dovetails with this family's race against time.

Review by Sheila Fitzgibbon, PRC Librarian

Ed. Note: In November 2006, Stephen's respirator accidentally detached, causing cardiac arrest. He died at the age of 37. His last act was to donate his kidneys for transplant.

Resources

The foundation the Heywoods formed is now called The ALS Therapy Development Institute; see http://www.als.net/

ALS Association, see www.alsa.org

Pulitzer Prize winning author Jonathan Weiner wrote a book about the Heywoods. His Brother's Keeper: a Story from the Edge of Medicine is available from the Paralylsis Resource Center library.

ALS Therapy Development InstituteThe ALS Therapy Development Institute is a nonprofit biotechnology company discovering treatments for patients alive today. Our approach combines the power of a nonprofit mission with the best practices of a for-profit biotechnology company: rigorous, open-minded research and proven drug development techniques.

The ALS AssociationThe ALS Association symbolizes the hopes of people everywhere that Amyotrophic Lateral Sclerosis will one day be a disease of the past – relegated to historical status, studied in medical textbooks, conquered by the dedication of thousands who have worked ceaselessly to understand and eradicate this perplexing killer.

ALS LinksA link portal for ALS. Advocacy, resources and support pages.

A Reeve Foundation Fact Sheet on ALS (PDF)

Project ALSA New York-based nonprofit that raises funds to support ALS research.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.