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Duke ALS Clinic News Archive
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March 16, 2009
Lithium Trial Opens
at Duke
Today we are excited to be
accepting new candidates for a randomized
double-blind placebo-controlled trial of
lithium, which we hope will slow down the
progression of ALS. If you are interested in
being screened for this trial, please call
Karen Grace at 919 668-2844. Details of the
study can be found at
http://www.clinicaltrials.gov/ct2/show/NCT00818389?term=lithium+als&rank=2.
February 14, 2009
New Online Survey
for Patients with ALS
he ALS Research Group is
interested in your thoughts about our ALS
clinics and the research studies we offer
there. Thanks for taking the time to
complete this very brief survey. It should
take about 20 minutes to complete. We hope
this will improve what we can offer you in
our clinics. You can skip any question you
don’t want to answer or don’t know how to
answer. Please complete this only if you
have ALS. Please complete it only one time.
Click here if you are willing to
complete it now.
January 22, 2009
IPlex and the
Telephone Game
Dr. Bedlack and colleagues
recently uncovered new information on IPlex
and share their thoughts on this, and on the
dangers…and opportunities that internet chat
rooms provide in this editorial.
http://www.informaworld.com/smpp/content~db=all?content=10.1080/17482960802673059
January 3, 2009
The Year Ahead
If you
thought 2008 was great, wait until you see
what we have in store for 2009! A few
hightlights include plans to increase our
global travels, with scheduled trips to
Greenville NC, Fayetteville NC, California,
Maryland, Washington, and Berlin Germany
already in the books. We will move toward
ALSA Certification for our Catfish Hunter
ALS Clinic in Greenville NC. We will
complete the Zenvia and Biomarker studies
this year, and hope to open trials of
lithium, arimoclomol, and exercise. We have
a new online survey for patients with ALS
which is posted on the main page; we hope to
use this to better understand what our PALS
and CALS like and don’t like about our
clinics and research studies. We will be
exploring new and better ways to interface
with our PALS and CALS over the internet. We
will continue to offer our PALS and CALS
state of the art support and dedication!
December 31, 2008
Year in Review
Isn’t it amazing how time
flies? We just completed another year here
and are again very proud of what we
accomplished. Members of our Duke ALS Team
travelled all over the world in the name of
ALS Advocacy, with purposes of raising
awareness, trying to inspire hope, raising
money, and making sure we are offering the
best possible care here in our Duke ALS
Clinic. Our trip to Washington DC as part of
ALS Advocacy Day was especially fun and
useful; not long after we returned we
learned that all the priorities we went to
talk to congress about were passed! These
include service connection for all veterans
with ALS, increased funding for the DOD’s
ALSRP, and a National ALS Registry. Congrats
to all those patients and caregivers who
came to Washington from around the country
and helped make this happen. Over the
summer, we were visited by Miss North
Carolina (Amanda Watson). In September we
opened the new Catfish Hunter ALS Clinic in
Greenville NC. In November we became the
33rd Certified ALSA Clinic in the world.
Throughout 2008, we ran two research
studies: Zenvia for patients with ALS who
have pseudobulbar affect, and the ALS
Biomarker study. These remain open for
enrollment as we move into 2009. Our team
published several papers and book chapters
this year. Finally, we were fortunate to
receive many awards this year, including:
America’s Best Doctors (Dr. Bedlack),
America’s Best Hospitals (Duke), and
Triangle Business Journal’s Health Care Hero
Award (Duke ALS Clinic). Thanks to all our
staff and most importantly to our PALS and
CALS who continue to inspire us every day!
November 22, 2008
Duke ALS Clinic T-Shirts
Just in time for the
holidays, we have a new stock of Duke ALS
Clinic T-shirts. We have army green shirts
that say "Fight ALS" and we have Duke blue
shirts that say "Ask Me About My Motor
Neurons." Spread the word about ALS and our
clinic by wearing one or giving them as
gifts. Call Stacey at 919 668-2875 for
orders.
November 13, 2008
Duke Becomes 33rd Certified ALS
Center
We are proud
to announce that today we officially became
the 33rd ALS Center that is Certified by the
ALS Association. This validates the model we
started in 2001, and more importantly will
ensure that we continue to have the
resources and support of the ALS Association
to keep us on the front edge of clinical
care and research opportunities for our PALS
and their families. For more information see
http://neurotalk.psychcentral.com/showthread.php?p=407887
November 3, 2008
Off to Birmingham
Dr. Bedlack crossed the
Atlantic to attend the 19th International
Symposium on ALS/MND. This was attended by
more than 800 clinicians and researchers,
all focused on trying to better understand
ALS/MND, and to be able to provide new and
better options for caring with patients
affected by it. It was a truly exciting and
amazing meeting with a lot of progress made
since last year. Particular highlights
included presentations on stem cells showing
that they can now be obtained from a variety
of non-controversial sources, can be made
into motor neurons or astroglial cells, and
can be safely injected into the spinal cord
of animals with ALS which then prolongs
their survival. Also, presentations on
potential causes of sporadic ALS, including
some very interesting new data suggesting
that exposure to cyanobacteria may be able
to trigger the disease in susceptible
individuals. For more details see
http://www.mndassociation.org/research/for_researchers/
international_symposium/19th_international_symposium/index.html
November 1, 2008
My Take on IPLEX
In the past 3 months, we
have received a flurry of emails about a
compound being proposed for treatment of ALS
called IPLEX. Unfortunately, this is one of
those areas where the hype on the internet
as really spun out of control and is
creating a lot of misconceptions. The most
important misconception is that IPLEX works.
There is no good data to support this. Case
reports in ALS are notoriously unreliable
(the disease is tremendously variable across
patients). Remember the minocycline
story...a drug we all thought would work in
ALS and had under study. While it was being
studied many patients decided to take it on
their own, outside the study, at least in
part due to dramatic case reports of
patients stabilizing or improving on it.
When we finished the study we found that
patients taking the drug actually progressed
significantly faster than those on placebo!
The active ingredient in IPLEX is IGF-1.
This has already been studied in 3 large
double-blind randomized controlled trials
and none really showed a significant
benefit. There is also a binding protein in
IPLEX. It isn't clear that the addition of
this would make IPLEX work better than IGF-1
alone. Despite the above, the Italian
government has ruled that PALS in Italy be
allowed to try this drug on a compassionate
use basis. This isn't meant to be an
endorsement of efficacy...but it is being
taken that way by PALS on the net. Many of
my colleagues and I disagree with this
decision for several reasons. Imagine if our
government had decided to hand out vouchers
for minocycline as a treatment for ALS while
it was under study! We would never have been
able to get anyone to sign up for the trial
and thus never known that it was actually
hurting people. There is a large pipeline of
very exciting compounds coming into ALS
trials. Eventually, IPLEX will probably be
subject to such trials. Based upon what I
have stated above about IGF-1, personally, I
would rank IPLEX near the bottom of the
priority list of these agents. Stay hopeful,
but for the right reasons!
October 25, 2008
Triangle WalkThe Duke
Team was out in full force today, walking to
raise money and awareness for ALSA. Over
$100,000 was raised! For more details and
pictures see
http://walknc.alsa.org/site/TR/Walks/NorthCarolinaWalk?pg=entry&fr_id=4940&JServSessionIdr001=p4dkismyb2.app23b
October 21, 2008
Mariah Parham Hospital
Dr. Bedlack travelled to
Mariah Parham Hospital in Henderson NC to
deliver a breakfast seminar entitled "ALS
Update 2008."
October 13, 2008
Catfish Classic
Our clinic came out and
supported this year’s highly successful
Catfish Classic again. We even defended our
victory from last year with a blistering
score of 55 (16 under par!). For more
details see
http://www.catfishchapter.org/events/classic2008.html
October 12, 2008
Off to Asheville
Dr. Bedlack travelled to
Asheville today and spoke with the spirited
ALSA support group there. His talk entitled
"ALS Update: Signs of Progress, Reasons for
Hope" was well attended.
October 3, 2008
At the Northeast ALS ConsortiumThe Duke Clinic was
present at the annual meeting of the
Northeast ALS Consortium. This large
collection of North American ALS Clinics
works together on multi-center research
studies. An exciting array of research
trials is coming to Duke in 2009! More
details later. Dr. Bedlack presented his
ideas on optimizing access to and enrollment
in ALS research studies.
September 29, 2008
Tee’d Off at ALS
Stacey Asnani, Linda
Fishman-Cates, Tyler Story and Dr. Bedlack
were a formidable team in the Tee’d Off at
ALS golf tournament today. They put
together a 64 (8 under par) and came in
second.
September 26, 2008
New Catfish Hunter ALS Clinic Opens!After more than a year of planning, we
officially opened the Catfish Hunter ALS
Clinic today at Pitt County Memorial
Hospital in Greenville NC. A well-attended
ribbon cutting ceremony kicked things off,
and a wonderful reception and fund raiser
for the team was held at a local
restaurant. This clinic is designed to
provide state of the art multi-disciplinary
care for patients with ALS who live in
Eastern North Carolina. Dr. Bedlack and Dr.
Robert Frere of East Carolina Neurology are
clinic co-directors. The compassionate and
skilled team includes speech therapy,
respiratory therapy, nutrition, physical
therapy, occupational therapy, psychology,
social work and nursing. Stacey Asnani is
helping the new team and Dan Harrison will
provide equipment, as in the Duke Clinic.
September 22, 2008
Spreading the Message into ConnecticutDr. Bedlack
returned to his old stomping grounds this
week to visit friends, speak to medical
students about his career and deliver a
Neurobiology Seminar at the University of
Connecticut Health Center. While there, he
also participated in a live interview on
WNPR. You can listen to it here:
http://www.cpbn.org/program/where-we-live/episode/lou-gehrigs-disease
September 13, 2008
Quest for the CureMembers of
the Duke ALS Clinic were out to support our
patients with Primary Lateral Sclerosis at
the Race for the Cure in Raleigh this
weekend. Dr. Bedlack delivered a lecture
pointing out the barriers to research in PLS,
and offered suggestions for ways around
these. He also showed some of the exciting
pilot research studies for patients with PLS
that are going on within the Duke ALS
Clinic.
September 7, 2008
Raleigh ALSA Support
Group
Dr. Bedlack travelled to Raleigh to present
a new talk entitled “Beware Alternative
Therapies for ALS.” This talk showed what
therapies are known to work in ALS, what
qualifications make an ALS expert, what the
different types of evidence are, and what
specifically is wrong about pursing
alternative therapies such as amalgam
removal, antibiotics for atypical Lyme
Disease, chelation, Chinese Herbs, Eric is
Winning, and many others.
August 14, 2008
New Study Opens at Duke ALS Clinic
Today we
will start enrolling patients with ALS and
other motor neuron diseases, as well as
healthy controls in a study to look for
biomarkers that might someday help us
diagnose and follow ALS more easily. This is
an incredibly important study, as earlier
diagnosis and easier follow up are needed to
optimize our search for better disease
modifying therapies. We also have a few more
spaces left in our clinical trial of Zenvia
for treating the pathological laughing and
crying that sometimes occurs in ALS. See our
research page
for more details.
August 1, 2008
Good News for Veterans with ALS!
The past
month has been a good one for veterans with
ALS. In July, Secretary Peak decided to make
ALS a service connected disability. This was
one of the 3 issues we went to Washington in
March to advocate for (see previous news
story dated March 11, 2008). The policy
change, which goes into effect this month,
should significantly ease the financial
burden previously endured by veterans with
this disease. Also this month, we received
news that our project "A Clinical
Demonstration of an EEG Brain-Computer
Interface for ALS Patients" received full
funding support from the VA Cooperative
Studies Program. This project will allow
veterans with ALS to access a state of the
art system for communication which requires
no movement whatsoever…it is fully
controlled using brainwaves! We expect to
start enrolling patients by early 2009.
July 26, 2008
Spreading the Word
Dr. Bedlack
was out on the road this month, spreading
the message of hope and optimism that
permeates our clinic. Last week he delivered
Grand Rounds at Crozear Medical Center
outside Philadelphia. Today he spoke at a
meeting of support group leaders from NC and
SC. He will be speaking at a number of other
hospitals and support groups in coming
months.
July 23, 2008
Best Doctors, Best Hospitals….Again!
Duke ALS
Clinic Director Richard Bedlack was honored
for the 3rd year in a row in being selected
by his peers as one of America’s Best
Doctors. Only the top 5% of physicians in
the United States receive this honor each
year. See the details at
http://www.businessnc.com/index.php?src=gendocs&ref=BestDocs2008&category=BestDocs.
Also, earlier this month, Duke Hospital was
again selected as one of the top 10
hospitals in the country by US News and
World Report. This marks the 19th straight
year that Duke has made this list of top
hospitals. For details see
http://health.usnews.com/articles/health/best-hospitals/2008/07/10/best-hospitals-honor-roll.html
July 22, 2008
Miss North Carolina Visits Duke ALS Clinic
Amanda
Watson, the newly crowned Miss North
Carolina, visited our Duke ALS Clinic today.
She continues to do an amazing job raising
awareness of ALS. We wish her well on her
campaign to become Miss America. The visit
was covered by WRAL. See
http://www.wral.com/lifestyles/healthteam/story/3258013/
July 11, 2008
Jill Hollis on The Story with Dick Gordon
Duke PAL
Jill Hollis continues to tell her amazing
story and by doing so, raises awareness of
ALS and its treatment options. Listen to her
3rd segment on national news show The Story
with Dick Gordon
http://thestory.org/archive/the_story_557_Jill_Hollis_500_Things.mp3/view
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.
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
(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:
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
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!
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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