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Duke ALS Clinic News Archive


June 9, 2008

Arimoclomol Update

CytRx, the company that makes the drug arimoclomol, and is sponsoring the upcoming phase 3 study for patients with ALS, made an official announcement today regarding the FDA hold on further studies with their drug. The statement is as follows: CytRx also announced today that it plans to conduct additional preclinical toxicology studies of arimoclomol, in development for ALS and stroke recovery, which are expected to take up to one year to complete. Based on recent telephone discussions with the FDA regarding its clinical hold on arimoclomol for ALS, CytRx anticipates that the planned Phase 2b clinical trial of arimoclomol will remain on hold pending completion of this additional preclinical work. However, CytRx has not yet received a formal determination letter from the FDA with respect to the ongoing clinical hold of arimoclomol for ALS. In addition, CytRx anticipates that the time frame for initiating the previously planned Phase 2 clinical trial of arimoclomol in stroke recovery will depend on the results of the new preclinical toxicology studies and other factors.



May 11, 2008

Marching on Washington D.C.

Dr. Bedlack joined patients, families and other ALS physicians from around the country in an organized march on Washington D.C. today. The purpose was to make congress aware of issues related to ALS that we need their help on. Specific issues targeted this year included the national ALS registry, funding for research on veterans with ALS, and service connected disability benefits for all veterans with ALS. Dr. Bedlack and the North Carolina contingent got to meet personally with Senator Elizabeth Dole, and Congressman Walter Jones and David Price, and well as aides from our other Congressmans' offices.


April 28, 2008

Clinical Trial of Zenvia Opens at Duke ALS Clinic

See Zenvia under "Research"


April 14, 2008

Duke ALS Clinic Team at American Academy of Neurology

Members of the Duke ALS Clinic travelled to Chicago to exchange ideas on understanding and fighting ALS with approximately 10,000 colleagues from around the world at the American Academy of Neurology Meeting.  Dr. Bedlack presented 2 posters with medical student Dan Pastula.  Dr. Bedlack also led a meeting of the ALS Research Advocacy Subcommittee, led a meeting of the WNF ALS Research Group Website Subcommittee, and chaired the session on ALS Clinical Research.  Abstracts from the many interesting presentations on ALS are available at http://www.abstracts2view.com/aan2008chicago/


April 12, 2008

Duke ALS Clinic Director Travels to Myrtle Beach

Dr. Bedlack was honored to spend an afternoon with the Myrtle Beach ALSA Support Group.  His hour long talk was entitled "ALS Update April 2008: Signs of Progress, Reasons for Hope."


April 7, 2008

Duke ALS Team Plays Golf to Support Lee Fowler Classic

Dr. Bedlack, Stacey Asnani, Linda Fishman-Cates and Duke Chief Resident Andy Galbreath braved British Open like conditions to get out and support the Lee Fowler Classic, a successful annual fundraiser benefitting the ALS Association. Thanks to the 2 ringers seen in this picture, we managed to finish 3rd in the C-flight! For details see http://www.gopack.com/ViewArticle.dbml?DB_OEM_ID=9200&ATCLID=1435865


March 28, 2008

Duke ALS Clinic Wins Health Care hero Award

Our Duke ALS Clinic was honored to be selected for the first time as a "Health Care Hero" in the category of Health Care Innovator. We are very proud of our multi-disciplinary model, which maximizes quality and length of life for patients with ALS. For the full story see http://triangle.bizjournals.com/triangle/stories/2008/03/31/focus14.html


February 4, 2008

Lithium and ALS, My View

There have been many exciting studies on ALS published over the past few years. The most recent of these is this one on the use of lithium (see http://www.pnas.org/cgi/content/abstract/0708022105v1). While this is very exciting, it must be regarded as preliminary. There are problems with the article, including the unusually fast progression in the control mice, the extraordinarily small number of patients in the “trial”, the lack of double blindedness and the lack of comprehensive safety data on the lithium treated group. There will certainly be larger, better-designed trials of lithium forthcoming in the very near future. Until then, we will encourage our patients to avoid off label use of lithium (as we do for other unproven, potentially harmful treatments) and consider entering a clinical trial.


January 31, 2008

Year Upcoming and Beyond

While last year was busy, believe it or not, 2008 is shaping up to be even busier. We are scheduling 3-4 new and 10-12 return patients every week in 2008. Our care team is adding a new respiratory therapist. With these changes we will officially become one of the largest and most comprehensive ALS Clinics in the world. If all goes well, we will be offering clinical trials of arimoclomol, and of a novel brain-computer interface, and we will be building upon our levetiracetam trial. We will be offering multi-center studies looking for ALS biomarkers, and looking at oxidative stress markers. We will continue our local epidemiology and basic science programs, designed to better understand the cause of ALS, and the variability seen in its progression. Our travel schedule is already getting tight, with local, national and international trips planned for fundraising, advocacy and research. Dr. Bedlack just returned from a trip to Ft. Lauderdale, where he participated in the American Academy of Neurology’s Palatucci Advocacy Training Program. Within this, he has developed a plan to improve access to and enrollment in ALS research studies at Duke and all around North America. Some of this will require trips to Washington to lobby members of congress and the FDA! In another joint venture with ALSA, as well as the Catfish Hunter family, members of our team will open a new satellite "Catfish Hunter ALS Clinic" in Greenville, NC. This will bring the functional benefits of comprehensive patient care and the hope of research studies to patients with ALS in Eastern North Carolina.

Where do we go from there? Well, as they used to say in the beginning of the "Twilight Zone," this is a journey limited only by the imagination. If you have seen the way Dr. Bedlack dresses, you know there is no shortage of that in the Duke Clinic! Stay tuned to www.dukealsclinic.com for details.


December 31, 2007

Year in Review

2007 was the busiest year ever for the Duke ALS Clinic. We diagnosed approximately 100 new patients with ALS, and by the close of the year we were following nearly 250 patients with motor neuron diseases. Our multi-disciplinary care team grew to include 2 neurologists, 4 speech therapists, 2 physical therapists, 2 occupational therapists, a nutritionist, a social worker, 2 clinic nurses, 2 research nurses and a new neuropsychologist. From a research standpoint, we completed the multi-center DNA banking study, completed our own levetiracetam clinical trial, completed our own muscle biomarker pilot study, and completed our own epidemiology studies on survival and on diagnosis in veterans with ALS. Drs. Bedlack and Burke were authors on several manuscripts arising from this and prior work. Members of our team travelled to neighboring cities and states to support PALS in walks, runs and golf tournaments (we even somehow won some of the golf tournaments!). We also spoke at ALS conferences in Boston, New York, Philadelphia, Toronto and Tucson. These achievements would not have been possible without a substantial increase in ALSA sponsorship, which started here in July.


December 1, 2007

Off to Toronto

Several members of the Duke ALS Clinic Team are travelling to Toronto to attend the 18th International Symposium on ALS/MND. Our Team will make several presentations on research done in the Duke ALS Clinic over 2007. We will also be finalizing plans for a big upcoming year of new research opportunities for our patients!


November 20, 2007

ALSA National Office Visit

We were pleased to host Sharon Matland, RN, MBA today. Sharon is ALSA’s vice president of patient services, and is helping us prepare for ALSA certification, which we hope to have in early 2008.


October 20, 2007

2nd Annual MDA ALS Expo

2nd annual ALS Expo will be Saturday October 20th from 12:00-4:00pm at Wake Tech Community College. We are really excited about this year's program. There will be speakers and many vendors in attendance.


September 8, 16, & 29, 2007

Raising money and awareness

The Duke ALS clinic came out in force for multiple fundraisers this month. On 9/8/2007, we participated in the Triangle Walk to D'Feet ALS. As shown on the picture below, we sported our new army green "Fight ALS" t-shirts. This important fundraiser benefited the ALS association Jim "Catfish" Hunter chapter. On 9/16/2007 we participated in the Magnificent Mile to benefit the Spastic Paraplegia Foundation, which helps our patients with primary lateral sclerosis and hereditary spastic paraplegia. On 9/29/2007 we participated in the Down East Walk to DFeet ALS. Duke ALS Team members walked and Dr. Bedlack provided research updates at all these events. We saw many of our patients and families. Thanks to all for these great and successful efforts.


August 30, 2007

Duke Hospital Among America’s Best Again

For the 18th year in a row, Duke University Hospital has been named as one of the top 10 U.S. hospitals in the annual U.S. News & World Report's best hospital edition. Duke came in at seventh place, the same ranking it received in 2006. Duke University Hospital ranked highly in 15 of the specialties measured, with top-10 rankings in 10 of them. Duke is the only hospital in North Carolina and the Southeast ranked in the top 10. See http://www.dukehealth.org/HealthLibrary/News/10079


July 30, 2007

Spreading Enthusiasm and Hope

The Duke ALS Clinic Team continues to be busy spreading their message of enthusiasm and hope. Recent trips included visits to Raleigh to an ALSA Support Group and to an MDA Support Group. Also, to the American Tobacco Campus in Durham for the ALSA Triangle Walk Kick-Off Party.


July 10, 2007

Neuropsychology Joins the Duke ALS Team

The recent influx of funding support from ALSA has allowed us to begin expanding our multi-disciplinary care team. The first addition is Dr. Tyler Story from Neuropsychology. Dr. Story will help us screen for and treat anxiety, depression, cognitive and behavior problems. Look for even more expansion soon!


July 1, 2007

Best Doctors

Duke ALS Clinic Director, Richard Bedlack, was again selected by his peers as one of Americas Best Doctors. Only the top 5% of physicians achieve this honor each year. For details, see http://www.businessnc.com/index.php?src=gendocs&ref=BestDocs2007&category=BestDocs


June 1, 2007

Emerging Therapies Reviewed

Dr. Bedlack and colleagues have just published an up to date review of emerging therapies for amyotrophic lateral sclerosis. This was published in the journal "Expert Opinion in Emerging Drugs", http://www.expertopin.com. With the journal's permission, we have made this article available to you here on our website. Click Here to view the article. As you can see there are lots of reasons for hope here!


May 9, 2007

Duke Clinic Featured on The Story With Dick Gordon

Listen to one of our patients as she reflects on her disease and the role of our clinic in helping her and her family through it. Click Here


May 1, 2007

Duke Clinic Director Elected to ALSRG Board of Directors

Duke Clinic Director Richard Bedlack was honored to be elected by his peers to serve the next four years as a member of the Board of Directors for the ALS Research Group, the largest collaboration of ALS Clinicians and Scientists in North America.


April 9, 2007

Duke Team Hits the Links...Fore!

Members of the multidisciplinary Duke ALS Team hit the links to support the Lee Fowler Charity Classic, which raises money for ALS research. Pictured are Stacey Asnani, Linda Fishman-Cates, Dr. Rick Bedlack and his little brother Ron. The team finished in third place in their flight!


March 10, 2007

Up and At 'Em

Members of the Duke ALS Clinic, along with their families and friends, got up early again to “Stride and Ride” for the Muscular Dystrophy Association (MDA). The event raised $44,000 for the MDA. Participants are shown in the photo.

Stride and Ride Event


February 24, 2007

All Dressed Up!

The Duke ALS Team busted out their best duds to attend the MDA’s Imagine 2007 Gala in Raleigh, NC. Dr. Bedlack (wearing Dior Homme) was the keynote speaker and updated the audience on gains made toward understanding and treating all 42 of the diseases the MDA helps care for.


January 30, 2007

Dr. Don Cleveland Speaks at Duke

Dr. Don Cleveland, from the University of California, San Diego, delivered a wonderful review of the recent gains in understanding the biology of ALS. His visit has inspired us to create our own Duke ALS basic science team. Watch the “Research Section” of this website for future details!



January 27, 2007

All in For ALS!

Drs. Bedlack and Burke traveled to Houston Texas to support the MDA’s poker fundraiser “All In For ALS.” They met some wonderful volunteers, patients and families and shared their experiences together. Look for a similar event here in Durham in early 2008.


January 13, 2007

Duke ALS Clinic Director travels to Myrtle Beach

Dr. Rick Bedlack traveled to Myrtle Beach, SC to speak to a large, enthusiastic support group headed by Lynn Negley. His talk, entitled “ALS Update 1/13/07, Signs of Progress, Reasons for Hope” was well received. The event was covered by local television and newspapers.


December 31, 2006

What's Coming to Duke in 2007?

While 2006 was a year of unprecedented growth for us, we don’t plan to rest on it. We have more new trials that will be opening for recruitment soon. If you are not currently a patient here, and you want to be contacted when a trial opens, please call 919 668-2844 and give Karen your contact info. We will continue our epidemiology and expand our basic science research programs. We are particularly excited about the expansion of the Duke Center for Human Genetics which we hope will allow us to build an ALS Genetics program here at Duke. We will continue our advocacy and education work, and we will be increasing the size and scope of our multidisciplinary care team. We are expecting a continued increase in size, and will be expanding the duration of our Duke ALS Clinic to a full day each week, which should decrease wait times for new and return Patients. If you like our plans, and you want to pitch in, please see the “How You Can Help” section.


December 30, 2006

Year in Review at Duke ALS Clinic

Phew! 2006 was a busy year at the Duke ALS Clinic. We had 5 clinical trials running simultaneously this year: minocycline, sodium phenylbutyrate, arimoclomol, selection/combination trial and levetiracetam. We were involved in multiple epidemiology studies trying to better understand ALS in military veterans. We started an ALS basic science program here at Duke, and under a collaboration with Drexel University. We worked to spread a message of hope and optimism about ALS by traveling to support group meetings, speaking at fundraisers and doing a number of radio programs. We continued to educate the next generation of ALS scientists and physicians by mentoring and tutoring neurology residents and medical students. We expanded and improved our multidisciplinary care team, which will always be the foundation of our clinic. We now offer one of the most comprehensive ALS clinical programs in the country.

You, our readers, responded to these changes by coming to the clinic in record numbers! We are now averaging 1-2 new ALS referrals every week, and seeing 12-15 return patients every week. This makes us one of the largest ALS Clinics in the country. Patients and their families and friends also contributed record amounts of money to help us with our mutual goals. As the year winds down, all of us here in the Duke ALS Clinic want to thank you for helping us forge ahead toward better treatments for ALS and toward continued optimization of independence, function and quality of life for patients and their families. Happy Holidays!


December 1, 2006

Duke ALS Team Returns from Japan

The Duke ALS Team just returned from an exciting trip to Japan. The country was beautiful, and the people were incredibly nice. Best of all though, was the science we saw at the 17th International Symposium on ALS. For a great summary of this check out the following link:
http://www.als-mda.org/research/news/061201als_international_conf.html

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(Above) Dr. Bedlack and his wife Shelly explore the gardens in a Japanese temple.


November 22, 2006

Off to Japan

Members of the Duke ALS Clinic leave for the World Federation of Neurology’s International Symposium on ALS/MND. The Duke Clinic Team is part of multiple abstracts being presented. For more information click Here.


November 16, 2006

“ALS Expo” in Raleigh

The Muscular Dystrophy Association will bring patients, families, vendors and physicians together for a night of shared experiences. Dr. Bedlack will give a brief overview of the exciting progress that is being made in ALS.

Duke ALS Clinic on “The Story”

The Duke ALS Clinic was
featured on national public radio program "The Story" with Dick Gordon
today. Program details can be found by clicking Here.


November 4, 2006

“Magnificent Mile” Raises over $20,000 for Spastic Paraplegia Foundation.

On November 4, member of the Duke ALS Clinic participated in a fundraiser for patients with primary lateral sclerosis and hereditary spastic paraplegia. Several of the team members ran in races, and Dr. Bedlack spoke to the crowd of approximately 500 about the progress that is being made in these and other motor neuron diseases. See photos below:

Click for Full Size Image

Click for Full Size Image


November 16, 2006

“ALS Expo” in Raleigh

The Muscular Dystrophy Association will bring patients, families, vendors and physicians together for a night of shared experiences. Dr. Bedlack will give a brief overview of the exciting progress that is being made in ALS.


October 20, 2006

Donations Needed, Free T-Shirts!

Donations Needed, Free T-Shirts! We are in critical need of donations to maintain, and to build upon our existing clinical and research programs here in the Duke ALS Clinic. Your contributions are tax deductible. While supplies last, we are offering free T-shirts for any donation of $10 or more. If you are able to help, make your check out to Duke ALS Clinic and mail it to us at Duke Medical Center Box 3333, 932 Morreene Rd, Durham NC 27707. Specify your shirt size, and whether you want one that says "Ask me about my motor neurons" or "ALS Sucks, Fight It!"


October 19, 2006

Healthy People Needed for ALS Study

The DNA Banking study is attempting to gather blood samples from people with ALS, and from healthy controls. By comparing what is different between the blood samples, we hope to learn what kinds of genes and exposures might cause ALS. This knowledge might help us prevent the disease altogether someday! If you have ALS, or are a healthy person that is interested in helping with this study, please contact Debra or Karen at 919 668-2844 to arrange for a screening visit.


October 16, 2006

Duke ALS Team at Catfish Classic

The Duke ALS Team traveled to Wake Forest and was proud to help sponsor the second annual Catfish Classic, a golf tournament to benefit the ALS Association. Nurse coordinators Debra Heydt and Karen Grace were there to draw blood for the DNA Banking study. Clinic Director Dr. Rick Bedlack played in the tournament and spoke to the participants at dinner afterward about the progress in ALS research that is being fueled by events like this. For more on the Catfish Classic visit: http://www.catfishchapter.org/events/CatfishClassic2006.html


September 20, 2006

Still 4 Spots Left in Levetiracetam Study

Our studies are filling up faster than ever, but we still have a few openings in our study of levetiracetam. We are the only clinic in the world with this study. If you have ALS, PLS or PMA and have muscle cramps, please call
919-668-2844 to hear about this exciting opportunity.


September 20, 2006

Clinic Members Raising Awareness, Hope, Funding

Members of the Duke ALS Clinic have been actively involved in raising awareness, hope and funds for ALS research this month. Dr. Bedlack appeared on the MDA Telethon on 9/4/06, taped an upcoming episode of “The Story” for National Public Radio on 9/13/06 (watch http://www.wunc.org/thestory/ for the air date), participated in an interview on “Talk of the Town” on WNCT 1070AM on 9/20/06 and will be interviewed again on Pirate Radio 1250AM on 9/27/06. Other clinic members participated in fundraising walks.


September 15, 2006

Part 1 of Selection Study Fills

Part 1 of the exciting Selection Study which compares two different drug cocktails for the treatment of ALS is now full. We are starting a waiting list for patients interested in participating in Part 2 of this study. Call 919 668-2844 if you are interested.


August 14, 2006

Selection Trial Open for Enrollment

The long awaited “Selection Trial” opens for enrollment today. This will compare a cocktail of minocycline plus creatine against a cocktail of celecoxib plus creatine. All patients enrolled in this trial will receive one or the other cocktail. For further details and to be considered for screening, please call Karen Grace at 919-668-2844.


July 1, 2006

Duke Clinic Director Named One of America's Best Doctors

Richard Bedlack, Director of the Duke MDA/ALS Clinic, was honored to be selected by his peers today as one of America's Best Doctors. Only the top 5% of doctors make this list each year. To learn more check:
http://www.businessnc.com/index.php?src=gendocs&ref=BestDocs2007&category=BestDocs


June 30, 2006

Duke Again Named One of America's Top Hospitals

The US News and World Report has once again selected Duke as one of the top 10 hospitals in the country. "Duke's consistent high rankings among the top 10 best hospitals in the nation year-in and year-out is a testament to the excellent quality of patient care, the dedication of our employees, nurses and doctors, and to the innovation of our medical center," said Victor Dzau, M.D., Duke University Chancellor of Health Affairs and President and CEO of the Duke University Health System. "We are proud to be included in this group of great U.S. medical institutions."
For more, see http://www.dukehealth.org/news/9796


June 17, 2006

Spellbound for a Cure Hosts Golf Tournament

An amazing group from Greensboro called Spellbound for a Cure continues to raise money for our clinic, this time through a golf tournament. In the past year, the group has raised over $43,000 for us! To see how you can help the Duke Clinic fight ALS see http://www.dukealsclinic.com/you_can_help.shtml

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June 5, 2006


Duke ALS Clinic Director Named to SPF Scientific Advisory Board

Dr. Richard Bedlack, Director of the Duke ALS Clinic, was honored to be named a member of the Scientific Advisory Board for the Spastic Paraplegia Foundation. In this role he will help review funding requests for research on hereditary spastic paraparesis and primary lateral sclerosis. For further details see http://www.sp-foundation.org/boards.htm


May 21, 2006

Duke ALS Clinic Director Speaks at Raleigh MDA Support Group

On Sunday, May 21 Dr. Rick Bedlack spoke at an MDA Support Group in Raleigh NC. His talk entitled "ALS Update: A Reason for Hope" was upbeat and well received. A lively discussion followed.


May 13, 2006

Spellbound for a Cure Raises $40,000 for the Duke ALS Clinic

Over the past few months, a Greensboro NC neighborhood has held a number of events (car washes, poker games, silent auctions, etc.) to help raise money for ALS research on behalf of one of their own who has been affected by ALS. On Saturday, May 13, the group (called "Spellbound for a Cure") held a large gala including a live band, food, auction, amusements and a walk. At the end of the day they presented Dr. Bedlack with a check for $40,000! This is the largest private donation our clinic has ever received!
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April 30, 2006

Duke ALS Team Part of Multiple Abstracts

The Duke ALS Team participated in 5 different abstracts submitted to the World Federation of Neurology ALS Meeting this year. The abstracts have to do with the VA ALS Registry, the Sodium Phenylbutyrate Study, the Arimoclomol Study, and the newly opened Levetiracetam Study. The meeting will be held in November in Yokohama Japan.


April 17, 2006

Chat Room for Women with ALS

Selena Helms, Duke ALS Clinic speech therapist, has created a chat room just for women with ALS. The chat room has received local, national and international recognition this month. To join, visit http://health.groups.yahoo.com/group/womenwithals/


April 2, 2006

Nutritionist Visits Raleigh ALS Group

Sue Steves, Duke ALS Clinic nutritionist, spoke at a Raleigh ALS Support Group. She discussed the importance of nutrition in this disease, tips for increasing calories, different consistency diets and feeding tubes. A lively question and answer session ensued lasting two hours!


March 27, 2006

Duke ALS Clinic Director Speaks in Philadelphia

Dr. Richard Bedlack, Director of the Duke ALS Clinic, just returned from a busy weekend in Philadelphia. On Friday, March 24, he gave Neurology Grand Rounds at Drexel University. Later that day he toured the Drexel ALS Clinic and its affiliated basic science labs. This Spring, Bedlack will be collaborating with Drexel's Dr. Terry Heiman-Patterson and Dr. Jeffrey Deitch on a project testing the effects of levetiracetam in ALS cell cultures, ALS animals and ALS patients.

Friday evening Bedlack attended a remarkable fundraiser at a local garden shop, which benefitted the ALS Hope Foundation, (centered in Philadelphia).

Saturday he and his wife Shelly found time to squeeze in a couple of Philly Cheese Steaks at the famous "Jim's."

On Sunday March 26, Bedlack was the keynote speaker for the annual ALS Hope Foundation luncheon. His talk entitled "ALS Clinical Research Update" was upbeat, exciting and well received by the 80 patients, family members, clinicians and scientists in attendance.


March 18, 2006

Duke ALS Clinic Team Walks to Benefit MDA

On Saturday, March 18 several members of the Duke ALS Clinic Team got up early to participate in the MDA's "Stride and Ride" fundraiser at the Cary Town Center. In attendance were Clinic Director Dr. Richard Bedlack, Nurse Sandra Dawson, Social Worker Stacey Asnani, Physical Therapist Linda Fishman-Cates, Occupational Therapist Tina Lyons-Bowman and Equipment Vendor Dan Harrison. Several of the Clinic Team members brought friends and family as well. Approximately $30,000 was raised to benefit patients suffering from diseases covered by the MDA, which include ALS.


March 17, 2006

Duke ALS Clinic Director Speaks in Greensboro

Dr. Richard Bedlack, Director of the Duke ALS Clinic, rang in St. Patrick's Day with a wonderful neighborhood group in Greensboro that is rallying around one of his patients, recently diagnosed with ALS. Bedlack addressed the group on progress being made in ALS, and stressed the importance of "grass roots" fundraising efforts in speeding this progress along. This particular group, which calls itself "SpellBound" has laid very well organized plans for raising funds for ALS research.

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