Work(s) in Progress

Funky Winkerbean

I read the comic Funky Winkerbean each morning on the Seattle Post Intelligencer. The creator, Tom Batiuk, has been unafraid to write and draw about difficult issues: teen pregnancy, adoption, alcoholism, divorce and most recently death of a beloved wife and mother (Lisa) from cancer.

Lisa's Legacy Fund for Cancer Research and Education has been established to support the University Hospitals Ireland Cancer Center in Cleveland, Ohio.

From the Funky Winkerbean website:

The University Hospitals Ireland Cancer Center is one of only 40 comprehensive cancer centers in the United States, as designated by the National Institutes of Health. Currently in its 19th year of operation, it is a leading center for patient care, cancer research, and community education about cancer care. One hundred percent of the donations to Lisa’s Legacy Fund will go to cancer research and education at Ireland Cancer Center. Ongoing research includes work on the development of a vaccine for breast cancer, a blood test for colon cancer, breakthrough chemotherapy treatments for all types of cancer featuring new drugs developed by the Center’s clinician-scientists, and new approaches to radiation treatments. Ireland Cancer Center is one of only eight cancer centers in the country to have access to a pipeline of new drugs through the National Cancer Institute for early phase clinical trials.

Batiuk, a cancer survivor himself, said, “Anyone whose family has been affected by cancer knows what a gut-wrenching experience it can be. While great strides have been made in the fight against cancer, there is still much work to do. I’ve received hundreds of letters and emails from people who recognized themselves or loved ones in Lisa’s story. She came to represent the many individual battles against cancer that people fight everyday. Beyond the emotional impact that Lisa’s story has had on people, Lisa’s Legacy Fund will now have a real impact on the continuing fight against cancer.”

You can support Lisa's Fund by donating directly to the Cancer Center or by purchasing Tom Batiuk's new book on Lisa called Lisa's Story: The Other Shoe.

Memory Walk

My cousin's husband is raising money for Alzheimer Disease research by participating in their Memory Walk 2007 Event.

From the walk website:

We are determined to make a difference! By participating in the 2007 Memory Walk®, we have committed to raise money for Alzheimer research and to care for people with the disease.

Currently over 5 million Americans have Alzheimer's disease. Unless we find a way to change the course, 16 million Americans could have Alzheimer’s by 2050.

We want to fight this devastating disease, but we can’t do it without the help of people like you. Funds raised at Memory Walk support research that is on the brink of promising new treatments to slow and prevent Alzheimer’s and local programs to improve the lives of individuals living with the disease.

On behalf of the millions of Americans who are living with Alzheimer’s, thank you for supporting our efforts.

If you would like to help support Chris, you can do so here. Alternatively, I'm sure there is a walk in your own neighborhood that you could participate in.

Breakfast of Champions

Last week I attended the annual Breakfast of Champions event held by the Mile High Down Syndrome Association in conjunction with the Eleanor Roosevelt Institute. The goal of this event is to raise money and awareness for people with Down syndrome whether for research or family support services.

Often the keynote speaker is a person or family member of a person with Down syndrome such as Annie Forts who spoke last year.

This year was different. This year a professional motivational speaker, Sam Glenn, gave the keynote presentation. I have never seen anything like this. There was a large chalk board on the podium. After the introductory speeches, the lights went dark. Two spot lights were turned on and illuminated the large dark board. Inspirational music echoed through the room. Sam leapt onto stage and donned a glove and a mask. For the next ~15 minutes he drew in vibrant colors. At first it was difficult to make out what the image would be. My brain kept trying to make recognizable shapes from the swirls of color. At first I thought it would turn into some psychedelic stuffed animal but slowly the scene emerged, much like this image. You can view a video clip of his light house drawing process complete with inspirational music. But that was not all, when the drawing was complete the light show began, with the score from the first Star Wars movie playing in the back ground. A spotlight from the light house moved across the water. The birds flew out of the picture. Compelling words and ideas flashed across the image. The mood in the room, which had been somber after a mother shared her experience of learning that her newborn unexpectedly had Down Syndrome and the health problems she had faced, lifted.

After the drawing and light show were complete, Sam Glenn regaled us on attitude. To lighten up. His humor was somewhat crude and yet the tension flowed out of the room. He spent time telling us, and showing us, how a single person, through his or her words and actions can completely change the feeling of people all around. He mesmerized. One person, with his or her glum and unhappy attitude, can bring down all those around them. So too can one person with a bright smile and a kind word raise up the mood of everyone within the sphere of his or her influence.

Who would you rather be? Who would you rather spend time with? Be that person.

The Limb Preservation Foundation

The Limb Preservation Foundation was founded in 1987 by Dr. Ross Wilkins with the sole purpose of saving lives and limbs. In his own words: When I started my practice over 20 years ago, 80% of patients with bone and extremity cancer died without their limbs. Today, because of the work that has been accomplished by The Limb Preservation Foundation and others, those statistics are completely reversed. But I have to tell you; even though fewer patients die or lose their limbs, this work doesn't get easier. In fact, it is harder than ever to lose these patients and friends.

The Limb Preservation Foundation has a variety of Programs that serve both patients and the community.

• Patient Assistance-so that all people with extremity issues could have access to the best medical care regardless of their ability to pay
• Emergency Distress Fund-a "last resort" fund to extremity patients with health or human welfare issues
• Medical Transport-to assist patients needing travel assistance to a specialized medical facility
• Limb Cancer Support Network-to provide emotional support and resource information to patients, family members and caregivers.
• Education-to promote awareness and prevention of limb-threatening conditions, generally due to traumatic injury, to both the public and medical professionals
• Scientific Research-to develop new therapies for the treatment of bone cancers and non-healing fractures.

My friend Martha is the executive director of the Limb Preservation Foundation. A few weeks ago she hosted a "free" breakfast for the foundation which promoted many of the ongoing initiatives of the organization. This was an incredible event which lasted only about 1 hour. Many people came to tell their personal stories about how they were benefited by the work of Dr. Ross Wilkins and the Limb Preservation Foundation. There were cancer survivors who did not have to lose limbs; parents of child survivors; spouses who got a few more years with a cherished husband or wife; people who had seen the flyer on how to preserve a limb that was removed by injury and were lucky enough to have it reattached. There was not a dry eye in the room. And then came the ask to support the foundation in their efforts. From a business perspective, this was an incredibly well orchestrated event. More than $400,000 was raised at this 1 hour "free" breakfast which was attended by just a few hundred people. Way to go Martha!

If you would like to support the Limb Preservation Foundation, you can do so here.

Bionic Eyes

One of my biggest fears about aging is loss of vision. This research headline fills me with hope.

Australian scientists begin human tests on 'bionic eye'

There are some forms of blindness where the optic nerve that carries the visual input remains intact. Australian scientists created an interface between the healthy optic nerve and a video camera attached to a pair of glasses to send visual signals into the brain. The goal is to provide enough "vision" that people would not need seeing eye dogs except as companions. So far one patient has seen light for the first time in years. These same researchers are working on developing electrodes to implant directly into the visual cortex of the brain to help those people with degeneration of the optic nerve. I can envision a world where blindness is  history. 

Just Imagine

In my day job, I run a research laboratory that is dedicated to understanding and eventually preventing or treating amyotrophic lateral sclerosis (ALS; Lou Gehrig's disease). This fatal disease, like so many others, has no effective treatment. People become trapped in their bodies because the cells that tell their muscles to move (motor neurons) die. Unlike other neurodegenerative diseases, there is generally little to no loss of cognitive function so the people afflicted by ALS know what is happening to them but they lose their ability to speak, move, swallow and eventually breathe. The augmentative communication devices to allow people who are paralyzed to communicate effectively and easily are difficult to adapt to people with ALS whose disease progresses rapidly (diagnosis to death is often just 2 to 5 years).

But just imagine if people could simply think to move a mouse cursor or an artificial limb. The possibilities that could open for people with movement disorders like ALS, paraplegias, or muscular dystrophies are simply amazing. I saw a article today where paralyzed patients were doing just that. In the article, by John Otrompke in Health IT World News, paralyzed patients could perform tasks and manipulate a mechanical hand through direct computer hook-ups. Cyberkinetics Neurotechnology Systems, Inc is one of the companies developing this type of technology. As with all technology development, the possibilities for abuse abound (i.e. what guarantees that the link from brain out to computer or device is a one-way connection). However, imagine a world, where the paralyzed can become independent through the power of their own thoughts with a little help from technology. I love this.