Stephen - Founder of ALS TDF and Inspiration for PatientsLikeMe

[BobbyB]

http://www.als.net/ffc/imageUpload/stephen3.jpg
Stephen - Founder of ALS TDF and Inspiration for PatientsLikeMe

Dear Friends,

I am sending this email out to our friends and family about my brother Stephen. Stephen is the brother of PatientsLikeMe’s founder Ben Heywood and long time friends with founder Jeff Cole.

Stephen was the inspiration and Founder of ALS TDF, which was started in our parents Basement in Newton MA and is now the leading research center for ALS.

I read this today in the paper and I thought it was appropriate.

From Martin Luther King’s sermon: Civilizations Greatest Need

"Our material and intellectual advances have outrun our moral progress… It is not enough to have the power of concentration… but worthy objectives upon which to concentrate."

ALS TDF will put out a formal statement shortly.

-jamie

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Dear Family and Friends,

Friday morning at 5:30 I received the call from Wendy that I have gone to bed each night hoping would never happen. I could tell from the sound of her voice that this one was different. When I arrived, their small street was lit up with the flashing lights of two fire trucks, an ambulance, and the police. Going inside past Wendy holding Alex in her arms and into his bedroom I found Stephen. His vent had disconnected, his lips were blue and despite aggressive CPR he looked peaceful perhaps with even a slight trace of a smile. I rode to Newton Wellesley with the ambulance driver who also grew up in Newton and remembered Stephen from other visits.

Between his caregiver Nicole and the EMT’s, Stephen had CPR for over 40 min. I don’t know if it is because he forgot that he was sick or because his heart is larger and stronger than any I have ever known but it restarted. You could actually see the disbelief on the ER team’s faces. You also knew that they were not sure this was a good thing because Stephen’s eyes were not responding at all. They wanted to make sure we understood how bad it was but they missed Stephen’s point as people often do.

Stephen would tell a joke about wanting to die a heroic death. It went something like this. There would be a fire and he would save someone but it would have be a slow fire with ramps because he would be in a wheelchair. I think he found a way to do that.

There is no blood flow to either hemisphere of his brain and he has no EEG signals. Stephen is gone, left in our hearts and in the relationships and structures he has built. Stephen was in command of his world and his body at all times and never lived life on anything other than his own terms. Thursday night before bed he sent an email to Ben saying how wonderful our Thanksgiving was. It was a wonderful Thanksgiving.

Stephen has kept his body alive so that his family and friends could gather and say goodbye. As Stephen indicated he wanted to he will donate his organs to others to give them a chance at the amazing years of life that he gave us. Sometime over the next few days if it is possible some very lucky person will get his heart.

So he found his slow fire and it has ramps.

-jamie

[BobbyB]

To The ALSKing Stephen Heywood
You have been, and shall continue to be an inspiration for us all.
You will be missed by many.
Enjoy heaven our friend. You’ve earned it

[BobbyB]

Stephen Heywood, 37; he opened his life to other ALS patients
By David Abel, Globe Staff | November 28, 2006

During the past several years, Stephen Heywood allowed stem cells to be injected into his spinal column, participated in clinical trials for new drugs and genetic studies, and received a brain implant as part of an experiment in how thoughts can be used to control a wheelchair and other robotic objects.

Just as the 37-year-old father from Newton gave his body to science in the waning years of his life -- even allowing himself to be the subject of the recently released, critically acclaimed documentary "So Much So Fast" -- he submitted himself to science in death as well.

Eight years after being diagnosed with ALS, the degenerative neurological disorder also known as Lou Gehrig's disease, Mr. Heywood lost the use of his ventilator early Friday morning, leaving him brain dead. His body survived for two days, long enough for him to donate his kidneys to two patients, relatives said.

"Stephen would tell a joke about wanting to die a heroic death," said his brother, Jamie of Newton. "It went something like this: There would be a fire, and he would save someone. But it would have be a slow fire with ramps, because he would be in a wheelchair. I think he found a way to do that."

In addition to the documentary, the brothers have been the subject of features in The New Yorker, on "60 Minutes," and in a book titled "His Brother's Keeper."

They chronicled how Jamie Heywood, a mechanical engineer without medical training, quit his job to seek a cure for ALS. He set up a foundation, raised millions of dollars, established a research laboratory, recruited scientists, and spent the last several years engaging in "guerrilla research" in a desperate effort to test a range of drugs, including those approved for other diseases.

"Stephen used to talk about how I gave him a gift in all the work we did on ALS," his brother said. "But what most people don't understand is that really he gave me the gift. . . . Stephen's disease will change . . . the way therapies are developed. His illness is a lens to make the process of discovering therapies better. His humanity gives the moral authority to fight the battles to fix the system."

Born in Newton, Mr. Heywood graduated from Newton North High School in 1987, his brother said. He studied English and art at Colgate University in Hamilton, N.Y., graduating in 1992.

Over the following six years, he worked in construction and forged a career in California by designing and building houses in a distinct way. His brother called him "an artist-builder."

"He felt how you formed the wood was a higher art than the actual architecture," Jamie Heywood said.

Mr. Heywood was diagnosed with ALS in 1998 and returned to Newton. He was married in 2000 and had a son, Alexander.

"The thing about Stephen that's the most wonderful, valuable thing about him was that he always said the right thing," said his wife, Wendy. "He made you feel special, that he knew you through and through. He had a sort of Zen knowing. He said everything straight.

" He had the capacity to love everybody, for who they were. He never wanted to change them."

Even as his ALS progressed toward paralysis, he built three houses, including his own. His brother said he trained apprentice craftsmen when he could no longer use his hands and inspired others to imagine and build his designs when he could no longer use his voice.

In 1999, his brother founded ALS TDF, what he calls the world's first nonprofit biotechnology company. Mr. Heywood's other brother, Ben of Newton, and a friend started another company, PatientsLikeMe, allowing Mr. Heywood and other patients to share their disease progression and treatment regimens online.

"Stephen inspired those around him to imagine the impossible and then quietly challenged them to make it reality," Jamie Heywood said. "Though Stephen's ALS was advanced, no one thought of him as a dying man. He inspired thousands of ALS patients, not by fighting or living defiantly against the disease, but by simply making it inconsequential. . . . Stephen lived his life and forgot his disease."

Besides his wife, son, and brothers, Mr. Heywood leaves his, parents, John and Peggy of Newton.

A memorial service will be held at 3 p.m. Sunday at Grace Episcopal Church in Newton Center.
http://www.boston.com/business/artic...ls _patients/
__________________
ALS/MND Registry
http://www.patientslikeme.com/registry

[BobbyB]

Volunteer praised for his battle with ALS
BY RICK FOSTER SUN CHRONICLE STAFF
Wednesday, November 29, 2006 1:56 AM EST

FOXBORO - Stephen Heywood, who died Sunday after a long struggle with ALS - also called Lou Gehrig's Disease - was likened to aviation pioneer Orville Wright Tuesday for his work in helping advance a neural interface system that could one day enable quadriplegics to use their thoughts to overcome profound disabilities.

The paralyzed 37-year-old Newton architectural designer had participated in a groundbreaking clinical trial of the BrainGate Neural Interface System developed by Foxboro-based Cyberkinetics Neurotechnology Systems. Heywood died Sunday as a result of respiratory failure unrelated to the trial.

Heywood's perseverance in the face of the crippling disease was documented on the CBS News program "60 Minutes," the New Yorker and an acclaimed documentary titled "So Much, So Fast" and in a book.

"Stephen Heywood's participation in the BrainGate pilot trial can be compared to Orville Wright's first plane flight from the hilltop in Kitty Hawk, N.C. His efforts over the last year have demonstrated the potential of the BrainGate System to improve the lives of those with ALS and other motor neuron diseases," Cyberkinetics President and CEO Timothy Surgenor said.

Heywood volunteered to participate in the clinical trial "because he believed it could change the world," said James A. Heywood, Stephen Heywood's brother and CEO and d'Arbeloff Founding Director of the ALS Therapy Development Foundation.

"Following a recent BrainGate session in which he worked to control a robotic arm, Stephen sent me an e-mail message that read: 'After being paralyzed for so long, it is almost impossible to describe the magical feeling of imagining a motion and having it occur,'" he said. "Those with Stephen's pioneering spirit can see that the BrainGate technology, though only in its infancy, has the potential to enable those who are completely disabled to control computers, wheelchairs and robots with their minds.

"My family and I applaud the team at Cyberkinetics and the investors who support this valuable work for having the vision to bring this promising technology into reality."

In appreciation of Stephen Heywood's contributions to the development of Cyberkinetics' BrainGate technology, the company said it will make a contribution to the ALS Therapy Development Foundation.

Cyberkinetics develops neural stimulation, sensing and processing technology aimed at improving the lives of those with severe paralysis resulting from spinal cord injuries, neurological disorders and other conditions of the nervous system.

[Chad]

God bless Stephen, and his brother. The book about them written about 3 or 4 years ago was wonderful. This disease has got to be stopped. --Chad

[wallyw1]

From Wally, Jr., Wally, Sr. and Gay--We wish you peace and comfort. Your family has been a blessing for the rest of us. God Bless you and give you strength.

[wlampa]

This is a big loss. I wish Stephen and his family peace.

[Homeflight]

Even if I never met Stephen, I was very impressed by the way he lived life, and the way he has touched other peoples' souls, from what I've read in the forums. When I heard about the sad news, it was like a "cold shower". I just want to give my sincere condoleances to his family and friends.