michigan matters june 2011
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June 2011 edition. Ed Dobson spotlight.TRANSCRIPT
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Our mission: To lead the fight to cure and treat
ALS through global cutting-edge research, and to
empower people with Lou Gehrig’s disease and
their families to live fuller lives by providing
them with compassionate care and support.
Our Vision: Creating a world without ALS
Staff
Stacey Orsted Executive Director [email protected] Kristen Munyan, RN, MSN-Ed Care Services Manager [email protected] Robbie Banfill Care Services Coordinator [email protected] Paula Morning Development Coordinator [email protected] Volunteer Coordinator [email protected] Cathryn Rybicki Accountant [email protected] Julia Bauer “Michigan Matters” editor [email protected] Website: www.alsa-michigan.org Email: [email protected]
West Michigan Office 678 Front St., Suite 410 Grand Rapids, MI 49504 Phone: 616-459-1900 Toll-free: 800-387-7121 Fax: 616-459-4522 Skype: alsawestmichigan East Michigan Office 675 E. Big Beaver Rd., Suite 207 Troy, MI 48083 Phone: 248-680-6540 Toll-free: 866-927-CURE Fax: 248-680-6541 Skype: alsamichganeast Ed. Note: Have news or com-pelling story? E-mail your ideas to [email protected]
Board of Directors John Crosby President Matt Wey Past President, National ALSA Board of Representatives JD Concepcion Dr. Deborah Gelinas Chip Hurley Pat Moran, Nominating Chair Todd Noeske, Public Policy Chair Jeffrey Swain Craig VanSplunter Susan Woolner Advisory Board Member Daniel Newman, M.D. Honorary Board Members Pamela Bouma Lew Chamberlain Ed Dobson, Ed.D. Randy Ernst Eva Feldman, M.D., Ph.D. Mike Melcher
In My View: By Stacey Orsted, Executive Director
ALS CERTIFIED CENTERS
AND CLINICS
Harry J. Hoenselaar Clinic; ALS Center Henry Ford Hospital Detroit, MI 48202
313-916-2835 Dr. Daniel Newman, Medical
Director
University of Michigan Health System
ALS Center Ann Arbor, MI 48109
734-936-9020 Dr. Kirsten Gruis, Medical
Director
The MSU at Mary Free Bed Rehabilitation
Hospital ALS Clinic
Grand Rapids, MI 49503 616-493-9727
Dr. Deborah F. Gelinas, Medical Director
The ALS Association symbolizes the hope of people eve-rywhere that ALS will one day be a disease of the past—relegated to historical status, studied in medical text-books, conquered by the dedication of thousands who have worked tirelessly to understand and eradicate this deadly disease.
Until that day comes, The ALS Association relentlessly pursues its mission to find a cure for and improve living with ALS. We will leave no stone unturned in search for the cure of the progressive neurodegenerative disease that took the life and name of baseball Legend Lou Geh-rig.
Keeping the fight alive—we are using Lou’s moniker to raise awareness and funds for local services by renaming and expanding our next event. The Iron Horse Ride to Defeat ALS (formerly known as Gears & Beers) is taking place in Ann Arbor and Lowell. Strong community part-nerships and volunteers have made this a truly remarka-ble event. Expecting over 100 riders that have been training for this scenic, challenging and fully supported ride—it is sure to make a difference in the lives of many. Please see the pages devoted to the ride in this magazine for more information or contact us directly.
Thank you for reading our “Michigan Matters” magazine and thank you for helping us in the fight against ALS! If you have any questions, comments or suggestions—we’d love to hear from you.
“Even if you are on the right track, you’ll get run over if you just sit there.” Will Rogers
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“It Ain’t Over” ................................ 4
The Iron Horse Ride to Defeat ALS ....... 6
One Dollar? DIY events for ALS ............ 7
Here comes Sept. & WALKS! ................ 8
Teeing off, bidding at CaddyAm .......... 9
ALS advocates connect in D.C. .......... 10
Seeking research $$ from Congress .... 11
Veteran struggles to find diagnosis .... 12
Great-grandmother’s influence ......... 13
ALSA-Michigan news ....................... 14
Hopeful research: Dexpramipexole .... 16
Connecting the dots: research .......... 17
Didja Know?/We Remember .............. 19
Events, Support Groups abound ......... 20
Inside Information
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Film No. 1 in a series of 7 by Ed Dobson
Although former pastor Ed Dobson has already authored several books, the well-loved preacher and long-time ALS survivor is turning to film to spread his message of hope.
But it was his soldier-son who inspired him to launch the series of vignettes. The first premiered on June 5 at Dobson’s home church, Calvary Church, 707 East Beltline Road NE.
“He was in Iraq, in the Army,” Dobson said of his son Daniel. “He read my book, ‘Prayers and Promises When Facing a Life-Threatening Illness.’”
Although Daniel has already become intrigued with writing his own screenplays and producing them with his Army buddies, he also urged his dad to go for it.
“He kept telling me the stories in the book would make a wonderful film series,” Ed said. “He’s been involved since Day One.”
The first vignette, based on Yogi Berra’s famous line, “It ain’t over ’til it’s over,” is ready to go, and two more will be produced this summer. The three-part series will be sold through Barnes and Noble and distributor David C. Cook starting this fall. Then, by next spring, four more films will be available.
“I think the basic idea was to give hope to people, no matter what they’re facing, whether it’s ALS, cancer, divorce, losing a job… Those seven topics seem to be, for lack of a better word, transcendent.”
Ed’s first film, “It Ain’t Over,” will go global June 6, a free film available on his website, www.edsstory.com When his publishers saw that first film, they decided it should have the broadest possible distribution – for free.
“They were so moved by the first film,” Dobson said. “When they saw it, they felt it was so compelling.”
Spreading a Message of Hope:
1. “It Ain’t Over” (out
June 6 online, free at www.edsstory.com)
2. “Consider the Birds” 3. “Be There”
By next spring, four more films will be on DVD:
4. “Attached” 5. “Forgiveness”
6. “Grateful” 7. “Healing”
Films are produced by non-profit Flannel.org. Steve Carr, who heads the effort, said the group has been discussing the project with Dobson “for nearly three years.”
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“I’ll talk a little bit about the film, and why we’re doing this,” he said.
So, what’s next? No. 2 film will focus on worry, titled “Consider the Birds.” And the third, “Be There,” is about presence, not verbiage.
It tackles the question, “What do you say when someone is going through a tough time?” The answer? “Just showing up and keeping your mouth shut,” Dobson said. He lived that mission when good friend and parishioner J. J. Bouma lost his ability to speak as he moved through the stages of
ALS. Dobson and Bouma are shown, at left.
“We met at Panera’s. He couldn’t talk, so I’d order for both of us, and we’d sit in silence for 30 minutes,” Dobson said. How could he resist the urge to talk, or ask yes-no questions?
“The more you know someone, the less you have to say.”
At the CaddyAm golf event and auction May 23, Ed showed “It Ain’t Over” to the crowd. As they watched Ed trace his early days
dealing with ALS, “I think people were encouraged and very moved by it,” he said.
Ten years into ALS, Dobson is a rare survivor, beating the typical life expectancy by twice. He has limited mobility in his arms and hands, but can still drive and talk with effort.
“I pace myself,” he said. Film shooting is limited to two days a week now, but in late June, it will ramp up to four-day weeks, back to back.
His wish for the new video series? To help the viewer “become the kind of person who can find hope in the midst of difficult circumstances.”
J. J. Bouma died in December 2006, but his legacy lives on for those who still wade through the murky waters of ALS. He was a major force behind establishing the ALS Clinic in Grand Rapids, based at Mary Free Bed Rehabilitation Hospital.
Here are a few scenes from “It Ain’t Over.”
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June 11th in Ann Arbor
and June 18th in Lowell For the first time, bicycle riders on both sides of the state will strap on helmets and pedal their hearts out, in support of the battle to defeat ALS.
Get organized now! The festivities begin with three biking distances. Then, at the finish line, there’s great food, locally brewed beer, and
music at the Gears & Beers after-party. As you plot your ride, plan to raise at least $250 (the base goal for riders 16 and up). We have plenty of ideas on the web site, so don’t be shy, Check out fund-
raising tips there. And give a hearty thanks to the event sponsors!
Teams are forming now or be a lone spoke! Check out www.ridetodefeatals.com Or on facebook: gears & beers Here’s a peek at bikers’ basics: 6/11: Olson Park
1551 Dhu Varren Rd, Ann Arbor 6/18: Fallasburg Park - Picnic Area
A-1 1124 Fallasburg Rd., Lowell
Registration: $75 per biker, in advance
Day of Event: $100 (that gets you food, beer, bike repair as needed, fluids, snacks, TLC, AND if you raise at least $500 by the ride date, you get this jersey!
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Although the ALS Association has big ideas and events to raise money, we all know other effective ideas come from the heart — your heart. So, if you have tons of friends, or super co-workers, or can round up a bushel full of relatives, here’s a chance to run your own show, AND help ALSA at the same time! It’s called the:
Here’s one upcoming “third party event” in Brighton that sounds like the perfect combination of motorcycling and poker, in memory of John Lonskey:
So, whether you pop a cork,
Ride a bike,
Place a bet,
Or roll a strike, the ALSA-fundraiser YOU plan will be a winner!
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Nope, it’s not too early to start recruiting your team and getting the word out: the biggest, best effort to raise money for PALS and ALS research comes one step at a time, when hundreds of people touched by this unforgiving disease take to the streets across Michigan. Register your family or corporate team today! Need help? Let us know.
You can find details and sign up here: www.walktodefeatals.org
Here’s a quick look at the schedule. Mark your calendars, and start getting organized now!
Sept. 11 — Jackson
Sept. 17 — Detroit
Sept. 18 — Grand Rapids
Sept. 24 — Portage
Oct. 1—Traverse City
Traverse City
Detroit
Portage
Grand Rapids
And big, big kudos to our super sponsors!
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On a rare, sunny day May 23, golfers and auction-goers gathered at Thousand Oaks Golf Club to raise money for local services, research, and scored a virtual hole-in-one with their generosity (not to mention fine form). Thanks to ALL who helped make this beautiful day beat par for all PALS! This event will raise almost $50,000! See more photos from the day on Shutterfly or Facebook/CaddyAm
No one would have scored a point without sponsors:
Matt Wey’s Team won the first annual Bruce Edwards Cup!
Event Chairman Randy Ernst
One of our many great auction items!
THANK YOU TO OUR SUPPORTERS!
The Wege Foundation The Cook Foundation
Charter Industries XPEDX
Noeske Family Citadel / Tony Gates
Fox 17 / Tim Doty GR Label Employees
Homewatch Caregivers Marsh
Muir Family Crosby Family
Lake Michigan Credit Union ALTL
Saur Family Forest Hills Foods
Wells Fargo Grand Buick
Ed Dobson Joan’s Garage
Northern Jet Management
Plus all of our volunteers and auction donors!!!! Michigan native Dan Pohl(R)
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Three generations of the Schnurstein family campaigned with their secret weapon:
baby Kylie, who clearly won the heart, and backing, of state Sen. Debbie
Stabenow.
Michiganders canvas Washington, campaign for ALS research dollars
When Washington, D.C., opened its doors to PALS, backers and survivors from across the U.S. this Mother’s Day, Michigan’s contingent was there in force.
Two days later, the 18-strong Michigan group didn’t balk at the challenge of advocating for millions of research dollars from a frugal Congress.
By the end of May, nearly 50 members of Congress had signed on to back $10 million for the nationwide ALS registry next year (compared to 35 last year).
And 65 gave their support to $15 million for Department of Defense research, trying to unknot the mystery that makes veterans twice as vulnerable to ALS as the general population.
Dr. Lucie Bruijn, chief scientist for ALSA, updated the crowd on SOD1, the most common familial form of ALS.
DAY ONE:
May 8
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Monday dawned bright, and full of emotion, when the plaza filled with row after row of black T-shirts. Their message: Lou Gehrig’s Disease is Stealing Our Loved Ones Piece by Piece. On the back, a name.
Above, rural New York PALS Debra Quinn sports a “Never Quit” tattoo. Her family has been devastated, but not defeated, by a variation of SOD1. Day Two focused on seminars and prep for the grand finale: Day Three, and our assault on Congress.
DAY TWO: 5/9/2011
DAY THREE: MAY 10
Rep. Fred Upton turned to Mickey for fun.
Tuesday began with Sen. Debbie
Stabenow (right)
Congressman Justin Amash met with the Gould and Willis family, while Rep. John Conyers’ assistant Joel Segal met with the Bauers.
PALS were touched, and appreciated attention to
detail; what other group offers Ensure to drink?
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ALS taps another veteran
About the first thing you notice about Dean Cutler is a sturdy walking stick nearly as tall as he is.
“I can’t stand on uneven ground, and I want to sit down more. I get tired easily,” Cutler said. He bought the walking stick more than five years ago, but just started using it recently.
“At the ALS Clinic, they told me, ‘We don’t want you falling,’” Cutler said. His journey to that diagnosis took a long, circuitous path before doctors sorted out he had ALS. Now 51, Cutler joined the Navy right out of high school, and served for six years. Later, he repaired computers as a field rep for Detroit-based Intergraph Corp. And he’s worked as a machinist, a sign-installer (including the big signs at Fifth Third Bank in Grand Rapids and the now-shuttered Theater 28 in Wyoming).
When he was just in his 20s, Cutler sensed he was dragging one foot. But it wasn’t until 2005 that he realized his balance was worsening. As he walked, he found himself rocking back and forth, just to stay upright. “That was getting your attention,” he said.
His family doctor ordered a slew of tests — four MRIs, an EMG, and others. All inconclusive. “I swear,” Cutler said, “He said, ‘When it gets worse, come back.’”
In 2009, a co-worker noticed Cutler’s “tracks” in the dust coating the workroom floor.
“He said, ‘Hey, look at your path.’ I was dragging my foot.” He was referred to a local surgeon, who urged him to see another specialist — a neurologist. But where? Ann Arbor? Chicago? Finally, Cutler ended up at Cleveland Clinic with Dr. Jennifer Ui. Another round of tests showed possible left-hand carpal tunnel… or maybe ALS.
Last July, Cutler took his quest to Dr. Deborah Gelinas, neurologist at the ALS Clinic run by MSU and Mary Free Bed in Grand Rapids. A series of biopsy, lumbar puncture, and all the earlier test results still couldn’t isolate the disease at the root of his symptoms.
Finally, on Jan. 4, he heard bittersweet news: he has ALS. That diagnosis, tough as it was, enabled him to qualify for Social Security Disability and Paralyzed Veterans of America benefits.
“Almost, it freed me,” he said of finally hearing he had ALS.
“I was starting to get de-pressed, because year, after year, after year, there was no firm diagno-sis.”
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Country gospel singer and friends make music after ALS stills his voice When ALS hit gospel country music star Joe Paul Nichols, he lost both his voice and his guitar-playing hand control. But he’s back with a CD of duets — star-
ring his pre-recorded vocals with those of his friends, in 14 duets on the new album, “Friends in High Places.” Nichols hasn’t been able to play since 2009, but with those friends, he’s still making music. His last song before ALS took his voice?
“Faith” You must have faith in everything you do.
Faith will help you find a way, faith will see you through.
Faith can move mountains and change the tide at sea. You can follow this guiding light, wherever you may be.
Like the darkness comes at the end of the day, there must be an end to the night.
And from the depths of your darkest moment, faith will show you the light.
Riley remembers Great-Grandma
By Riley Minier, Mrs. Smith’s Class (Here’s Riley’s entry in the Boyne-area essay contest by Kiwanis Intl. The contest for 5th graders asked, “If you had $50 to give to your favorite local charity, which charity would you give the contribution to and why?”) I would give $50 to the Lou Gehrig`s Disease (ALS) Foundation because they need money for people who have the disease. The disease affects everybody differently. Sometimes their muscle twitches or get paralyzed. To find out if you have Lou Gehrig's disease, doctors have to rule other diseases out by multiple choice. If you have it, normally it hits your arms and legs first. One good thing is that you can still feel, smell, and hear, but at the same your muscles are getting smaller and smaller until they disappear. Your brain still works. The Foundation gives equipment depending on what you need. The kinds of equipment they provide depends on the person. Sometimes they give motorized wheelchairs, swings to get in the bathtub, and a hospital bed. Lou Gehrig was a baseball player who got ALS, and he broke records. In 1939 he was elected to the Baseball Hall of Fame. He was a lefty, throwing to pitching, first baseman. He played in 2,130 consecutive games. On June 19, 1939 on his 36th birthday he was diagnosed with ALS. I did not know Lou Gehrig but my Grandma Janet had ALS too. My grandma had red hair like me, and she died on December 10, 2004, when I was only four years old. She was diagnosed approximately three years prior to her passing when she started tripping and falling. In closing, the ALS foundation is deserving of the $50 because they can help many people with this disease. My family asked them for help when we needed it with my Grandma. I know other people need the help too.
Riley’s essay won Honorable Mention in the Kiwanis 5th-graders’ essay contest, and placed in the Top Six for his school.
Here, Janet O. Granger, Riley and Pierce’s great-grandmother, share some hugs and scooter time with her two “boys.”
(And sure enough, looks like Great Grandma Granger IS responsible for her great grandsons’ red hair!)
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State Rep. Margaret O’Brien backs ALS effort online and in Lansing.
Portage-area state representative Margaret O’Brien helped push the state’s naming of May as ALS Awareness Month, and during the month, she came home to give her support to
constituents facing the challenges ALS presents. In a meeting with Michigan Chapter representatives of the ALS Association, O’Brien listened intently as Brian and Lindsay Schnurstein told their story. Brian, 30, is in his second year with ALS, and works from home, as the disease affects his balance, arm strength, and voice. The couple has a two-year-old daughter, Kylie, and the family came to Washington, D.C., to join in the ALS Advocacy Day. The day after the Portage gathering, O’Brien had changed her profile photo on Facebook to a group shot of the ALSA meeting, and vowed to spread the word. Thanks, Margaret! (Below, l. to r., Brian and Lindsey Schnurstein, Todd Noeske, Rep. O’Brien, and Stacey Orsted.)
Hospice is NOT a dirty word, says Moni Franks
In a deeply informative, April 15 seminar, Hospice Manager Moni Franks of Muskegon came to dispel some myths.
Hospice comes from the term hospitality, and was first used to describe services to dying patients by Dame Cicely Saunders, founder of the modern hospice movement. The relatively young movement started in the U.S. in 1972.
“In hospice, you as the patient and family determine what’s going to happen,” Franks said. “The No. 1 comment we get is, ‘I wish I’d called hospice sooner.’”
“The patient and family are one unit of care.”
Here’s your chance to wear your cause. Check out our website to order red wristbands and help win the battle!
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Caregivers may get paid, under contract, lawyer says.
To hold off nursing home expenses, some families could opt for a Caregiver Contract, elder law specialist Ryan Huizenga told those attending an ALS Association seminar.
“Medicaid considers any care by family members “love and compassion” care, but it can be a significant drain on the caregiver’s resources.
“If there is written contract for care, to meet Medicare rules, a family member can get paid for giving care, and it won’t count against the patient’s estate,” Huizenga said.
As for long-term care insurance? It’s a good idea, he said.
And if you’re in a hospital when your insurance company decides to stop paying, watch out.
“The hospital seeks guardianship, to say the patient doesn’t need hospital care. The primary reason? Non-payment of bills.”
And if you die without a will? “The State of Michigan has a plan for you,” he said, with a wry smile. “If no family is found, Michigan takes it all. ”
Whew! It’s been a Busy May! Your Michigan Chapter “gets around”:
Showed up 18-strong at ALS Advocacy Day (actually three days in Washington, D.C.)
Teed off at CaddyAm and auction Sponsored a webinar and call-in, “What’s happening in Washington?” Celebrated May as ALS Awareness Month
(ALL month!)
Ever wonder what’s in that “Loan Closet?” Now PALS, caregivers, and ALS Clinic nurses won’t have to trek to either East or West to see what’s tucked away in the ALSA loan closet. The Michigan ALSA Patient Services Team used its head, heart, and technical prowess to create an online inventory, where dura-ble medical equipment can be inventoried and reserved electronically.
Check out the current gear online here. (hold CTRL, then click your mouse to see any link)
Did we mention technology? Yep!
New webinar services are spreading their wings, and will take flight starting in June.
The webinar program, www.anymeeting.com, will provide an online fo-rum (did we mention, “free?”) open to all.
Bi-monthly webinars are being planned starting
this summer, to tackle topical issues (i.e., inti-macy, caregiver resources, research). Curious? Call 866.927.CURE, check the web site , or find ALSA Michigan on Facebook!
Visit D.C. vicariously! Hundreds of photographs were taken during the Advocacy Conference that capture the emotion, enthusiasm and power of the three day ALS Advocacy Day event. Visit our website for photos. Downloads are available free until Aug. 19.
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Could this drug change the face of ALS?
For researchers who by nature are circumspect, the latest clinical trial of Dexpramipexole is making some of them, well, nearly giddy.
What’s all the excitement? The drug SEEMS to stall the progression of ALS for three to five years in some of the early trial subjects.
Knopp Biosciences, whose founder Walter Knopp had ALS, is leading the development of the drug for the clinical trial, along with BioGen.
Dr. Jim Bennett at the University of Virginia discovered that higher doses of Dexpramipexole resulted in better function and stability.
“Some had low dose and some high dose. There seemed to be a difference,” said Dr. Douglas Kerr.
Now, the hopefully potent drug is in its third phase, in a trial dubbed EMPOWER, and the only clinical trial site in Michigan will be in Grand Rapids, at the MSU-Mary Free Bed ALS Clinic.
“It’s a large Phase III program, with 804 patients,” he said. It will be given in the highest dose of 300 mg. to half of the participants, while the other half will receive a placebo. Those getting the drug will take 150 mg. tablets twice a day, for up to 18 months.
The 12– to 18-month treatment will be administered at 45 U.S. centers and another 35 other sites globally. Participating centers are listed on clinicaltrial.gov.
To qualify for the clinical trial, participants must be within 24 months of diagnosis, and have sitting-up vital capacities of 65 or better, determined at the screening.
What about Rilutek? Those in the trial could either be on it for more than two months, or have been off it for one month or longer — either way.
When might this drug be available to all PALS? That depends on how quickly the clinical trial wraps up.
“The goal is to hurry,” Dr. Kerr said. “We should know the complete results by the end of 2012.”
So far? Eighteen are enrolled. And what would be considered significant success?
“A 30 percent slowing of functional decline would be significant,” Dr. Kerr said.
Good news for fluffy people?
Looks like being on the hefty side could help PALS live longer. In a study by nutritionist Anne-Marie Wills at Mass General, PALS with BMIs of 30-35 fared the best; skinny, “normal,” or way overweight? Not so well.
So, if you’re slightly overweight, say BMI of 25-30, or moderately obese (up to 35), don’t worry. It’s a phat, phat world we’re trying to live in.
Head injuries cause ALS? Nope.
Going back to 1980, researcher Carmel Armon said the medical literature does NOT support a link be-tween head injuries and ALS onset. The issue flared up in August, when a “small study” suggested head injury in professional athletes could contribute to the disease. The researcher's conclusion: “The issue does not merit further investigation.”
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So the mouse says to the monkey, “Hey, are you really
built better for TDP-43 trials?” Insert your own response, but researchers say they have developed both mice and monkeys that can exhibit the TDP-43 mutation, a relatively rare form of familial ALS. Although the mice are “inducible,” meaning they can turn the mutation off and on, researchers for the monkey contigen6t say the primates come closer to showing traits of human ALS.
Israeli-U.S. stem cell study
This month, biotech company Brainstorm Cell Therapeutics won approval from Israeli officials to conduct a 1-2 phase trail of stem cell therapy in PALS.
The study, based in New York and Israel, will use NurOwn experimental therapy in 12 advanced-stage PALS, and another 12 in the early stages of the disease.
The first phases will determine the safety of the treatment. Future studies will focus on how well the experimental stem cell therapy works.
Good news, bad news PALS who tried lithium carbonate after reading about it on the online forum Patients Like Me,produced two divergent results:
1. Lithium did not slow the progression of ALS, supporting results from earlier clinical trials; and
2. Such web sites and other social media could become a valuable tool for faster research and quicker testing of experimental therapies.
In the online lithium tracking, ALS participants got prescriptions from their doctor, got blood tests regularly to monitor drug levels, then posted those results online along with other data. Researchers compared the lithium-users with other ALS patients with similar symptoms but who were not using lithium.
“The results from this study demonstrate a new way to think about conducting clinical trials,” said Valerie Cwik, with the MDA.
Another Web impact:
PALS cruising the web site, ALSUntangled, asked researchers at the site to study the ALS impact from low-dose Naltrexone, a drug approved for treating addiction. Another 31 PALS on the PatientsLikeMe site opted to try the drug; of 15 reporting results, about half felt some slight to moderate benefit, while the other half saw no improvement. One concern from the data? Naltrexone may harm the liver.
Connecting the Dots………...
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Eating, breathing...
When to ramp up?
Reports will soon be published to help figure out the best time to start breathing help and/or feeding tubes for PALS as the disease progresses. Scientists are formulating a TDEE, or Total Daily Energy Expenditure, for people with ALS, tapping body mass, diet, and activity level over the course of the illness.
Researchers expect to: use two approaches to pinpoint the best time to start a feeding tube, based on an individual’s energy needs, rather than
typical measures of bulbar function and weight loss; and
design a clinical trial to test use of NIPPV (non-invasive positive pressure ventilation) before respiratory symptoms begin.
Why study eating and breathing together? It’s a matter of
energy — expended and consumed. One example: assisting breathing at night could mean burning fewer
calories during waking hours, while a poor diet and fatigue could affect the function and structure of the diaphragm, causing more trouble breathing.
Reviving Vitamin E
So, if you’ve been quaffing Vitamin E for five years or more, you may be 64 percent as likely as the average guy to get ALS. Using it less than a year? No diff. How about two-to-four years? You may be 77 percent as likely. It doesn’t help muscle strength, but is an anti-oxidant that may help some people some of the time…. The study went long, from 1976 to 2005, for more than 1 million people. Of those, 805 developed ALS, but just 231 had records of Vitamin E usage.
ALS in the family
The ISIS-SOD1-Rx clinical trial is starting to recruit 32 patients with the SOD1 familial ALS mutation, for Phase 2 of the trial. The first phase involved 32 SOD1-affected people who were given a 12-hour spinal injection of four increasing doses of the trial drug; that phase determined if the drug was well-tolerated, not whether it improved the patient’s impairment. See clinicaltrial.gov for details of test sites (there are five in the U.S.)
What’s the FUS? Technically, it’s “fused in sarcoma,” but its general mischief is as a mutated gene. Researchers have used yeast and fruit flies to mimic the FUS mutation. The FUS gene typically resides in the cell nucleus, as an RNA-binding protein. But in ALS, the FUS gene can mutate, or show up in clumps of FUS protein outside the nucleus, in the cell body, to gum up the works.
In the yeast study, five proteins were found that could suppress the over-zealous mutation in yeast, while one human version, hUPF1, tackled the toxic yeast mutations.
A study of the trusty old fruit fly also is helping FUS researchers. Scientists at four centers in the U.S. have developed a fruit fly with FUS-related
ALS. The microscopic study may help FALS researchers find targeted treatments.
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Didja hear? Golfin’ for good
Although Brian and Lindsey Schnurstein live in Portage, his folks are Illini, so the Second Annual Swingin’ 4 Schnur is set for Tuesday, July 19, at
the Arrowhead Golf Club in Wheaton, Ill. Check his web site, www.bealsaware.com for details and lots of other goodies. And don’t miss Brian’s “Imagine” video on YouTube (and his web site, of course).
Senators stump for ALS research
Senators Susan Collins (R-Maine) and Lisa Murkow-ski (R-Alaska) discussed the ALS Research Program at the
Department of Defense, and the connection between ALS and military service at a recent hearing on the U.S. Army's FY 2012 budget.
View the video clips on The ALS Association's Facebook page
We Remember William Avery
Jeannine Barrera James Cole
Barbara Harkema Shirley Holzimmer
Richard Maj Melissa Page
Roger Simonton Thomas Tepper
We send heartfelt condolences to all the families and friends of those who’ve passed away in recent months. If we’ve overlooked anyone lost since March 1, 2011, please let us know at fightals@alsa-michigan.
Sen. Collins
Alaska Sen. Lisa Murkowski (left) met with ALS reps at the May 10 ALS Advoca-cy Day in Washington, D.C.
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UPCOMING EVENTS
JUNE 6: “It Ain’t Over” Ed Dobson Film No. 1 released online to general public JUNE 11: Iron Horse Bike Ride to Defeat ALS, followed by Gears & Beers after party; Olson Park, Ann Arbor JUNE 18: Iron Horse Bike Ride to Defeat ALS, followed by Gears & Beers after party; Fallasburg Park, Lowell JUNE 25: First Annual John Lonskey ALS Charity Motorcycle Ride Poker Run, Brighton AUGUST 20: Rock and Rumble Motorcycle Ride to Defeat ALS, The Score, Grand Rapids Walk to Defeat ALS Sept. 11: Jackson Sept. 17: Detroit Sept. 18: Grand Rapids Sept. 24: Portage Oct. 1: Traverse City
FINDING SUPPORT Please contact our care services for current dates and times of established support groups at 866.927.CURE or [email protected] If you would like to connect individually with another patient or caregiver in your area—please let us know, we can help!
ANN ARBOR
BAY CITY AREA
FLINT
GRAND RAPIDS
HOLLAND/LAKESHORE
KALAMAZOO
ST. JOSEPH (NEW)
TRAVERSE CITY (NEW)
TROY
WYOMING (Survivor’s Group)
STATE WIDE CALL IN SUPPORT GROUP (bi monthly)