Patient Servcies News for June

health initiatives, epidemi-

ologic studies, and re-

search into biomarkers,

risk factors, and clinical

studies that identify new

treatments for the disease.

The second priority was to

appropriate $15 million to

continue the ALS Research

Program (ALSRP) at the

Department of Defense

(DOD).

Studies supported by the

DOD, Department of Veter-

ans Affairs, Harvard Univer-

sity and the Institute of

Medicine among others

repeatedly have found that

military veterans, regard-

less of branch or era of

service, are approximately

twice as likely to die from

Lou Gehrig's Disease as

those who have not served

in the military. These find-

ings were most recently

confirmed by a September

2009 study funded by the

VA and the National Insti-

tutes of Health.

Continued on page 2….

We just returned from an

exciting three days in

Washington DC for ALS

Advocacy. Advocates from

across the country met

with members of congress

and told their ALS story and

urged them to join us as

champions against Lou

Gehrig’s Disease.

The first priority included

appropriating $10 million

to continue the National

ALS Registry at the Centers

for Disease Control and

Prevention.

The Administration and

Congress made the estab-

lishment of a national ALS

patient registry a top prior-

ity through the enactment

of the ALS Registry Act in

2008 and by appropriating

funding to develop and

implement the registry,

including $6 million in FY

2010. These actions have

enabled the CDC/ATSDR to

launch the first phase of

the registry, including cre-

ating a national ALS regis-

try website that is expected

to enroll patients with ALS

beginning in 2010. When

fully operational the regis-

try will identify, for the first

time, the number of cases

of ALS in the U.S. and col-

lect data that is urgently

needed to help find the

causes of the disease and

how it can be treated, pre-

vented and, ultimately,

cured.

However, increased fund-

ing is necessary in FY 201

1 to fully implement the

registry, allow people with

ALS across the country to

self enroll in the registry

and enable the CDC to co-

ordinate with other federal

agencies to identify ALS

cases in all 50 states

through existing data-

bases. Moreover, funding

will facilitate the implemen-

tation of strategies that

ensure the registry cap-

tures ALS cases in rural

and urban underserved

areas. These steps are vital

elements of implementing

the ALS Registry Act and

fulfilling the promise of the

registry to advance public

Advocacy Day Update!

Special points of interest:

Advocacy Photo Album!

Details of Negative Trial Result for Talampanel

Read Mary Kay Duffie’s Story

Mark your calendar for Summer Seminars

Patient Services News

Caption describing picture or graphic.

The ALS Association, Michigan Chapter

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Inside this issue:

Advocacy Day Photos 2

Talampanel Trial Update 3

Coping with a Loved One’s

Illness Seminar

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Stem Cell Research Semi-

nar

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Meet Joe Kulwicki, New

ALSA Staff

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Calendar 5

Featured Family 6

In order to support our nation's

military heroes in the fight

against ALS, Congress and the

Department of Defense estab-

lished the ALS Research Pro-

gram in FY 2007. Unlike many

other research programs, which

focus on basic science, the

ALSRP is promoting transla-

tional research and is specifi-

cally designed to find new treat-

ments for ALS, a disease for

which an effective treatment

currently does not exist. The

ALSRP also is funding the best

science as funding is provided

on a competitive grant basis

and projects are peer reviewed.

While Congress has continued

to appropriate funding for the

ALSRP, including $7.5 million in

FY 2010, the current funding

level will only be able to support

approximately 3 to 4 projects.

Yet over 90 were submitted to

the program in FY 2009. As a

result, under the current level

more than 95% of submitted

projects will not receive funding.

Opportunities to discover and

deliver a treatment to veterans

will be lost, leaving them - and

all people living with the disease

- with no effective treatment

option. By appropriating $15

million for the ALSRP in FY2011,

Congress can continue this vital

program and take steps to en-

sure that our nation continues

to fight for our veterans just as

they fought for us.

We delivered and shared PALS

and CALS stories at each meet-

ing, this personal touch brought

a human factor and urgency to

our efforts. A heartfelt thanks to

all who shared stories!

Advocacy Continued...

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“We delivered and

shared PALS and

CALS stories at

each meeting, this

personal touch

brought a human

factor and urgency

to our efforts.”

On Monday June 14th, The

ALS Association Michigan

Chapter will welcome Keole-

bogile Semphadile, an inter-

national doctoral student

from Oakland University, as

she presents a seminar on

coping mechanisms for loved

one’s of the seriously ill. Ms.

Semphadile will discuss

strategies for effective cop-

ing, self care and stages of

grief during her presentation

at the Chapter’s Troy office.

Ms. Semphadile has over

twenty years experience as a

professional counselor in her

native country of Botswana

in Africa. She comes to our

Chapter as part of her doc-

toral training at Oakland Uni-

versity and is pleased to

share her extensive experi-

ence with our patients and

families in this educational

seminar.

The seminar will begin at

6:30pm and all are welcome

to attend. There is no cost to

attend this seminar, but

please RSVP to Kristen Mun-

yan, Patient Services Coordi-

nator if you are able to join

us.

The Troy office is located

at 675 E. Big Beaver, Suite

207. We are located on the

north side of Big Beaver be-

tween Rochester & Livernois.

of progression in partici-

pants with ALS treated

with placebo or either of

the 2 doses of the study

medication. While there

were more side effects

seen in participants

treated with the Talam-

panel, the dropout rates

were very similar in all

groups, making the nega-

tive results more convinc-

ing.

While this is a very disap-

pointing result for pa-

tients, caregivers, and

physicians, the convinc-

ing nature of the results

provides a clear answer

to the effectiveness of

this treatment for people

with ALS. Fortunately,

there are many other

promising drugs now be-

ing tested; it is important

for all to remain hopeful

and committed to finding

improved therapies for

ALS.

Thanks are due to the

patients who participated

in the study, as well as to

Teva Pharmaceutical In-

dustries Ltd. For funding

the study and the clinical

investigators who worked

so diligently to provide

high quality data so that

a clear result was ob-

tained.

For more information on

research being con-

ducted to improve thera-

pies for ALS, see The ALS

Association website.

A Research Update from

The ALS Association’s

National Office, May 19,

2010

On May 17, global phar-

maceutical company

Teva announced the re-

sults of the recently com-

pleted trial of Talam-

panel for people with

ALS. The results were

conclusively negative.

The ALS Functional Rat-

ing scale, a tool used to

assess changes in physi-

cal functioning in people

with ALS over time, was

the primary outcome

measure; both this meas-

ure and the other meas-

ures investigated showed

no difference in the rate

Coping with a Loved One’s Illness Seminar June 14th in Troy

Talampanel Trial Concluded with Negative Results

Page 3

“It is important for

all to remain

hopeful and

committed to

finding improved

therapies for ALS”

Join us as Ms. Keolebogile Sem-

phadile shares her thoughts on

coping with a loved one’s illness.

On June 24th The ALS Asso-

ciation Michigan Chapter will

host Dr. Merritt K. Taylor at

the Mary Free Bed ALS 2nd

Floor Conference Room as

he shares information re-

garding stem cell research

and ALS. Dr. Taylor is Assis-

tant Professor at Grand Val-

ley State University. He will

give a presentation on stem

cell research and answer

questions from attendees.

Please RSVP to Denise at

616-459-1900. The presen-

tation will address “Current

understanding of the cell

biology of ALS and related

therapeutic approaches.”

The discussion will include:

What insights do scientists

have about how ALS occurs?

Scientists have been at-

tempting to understand what

mechanisms have been dis-

rupted in ALS and recent

findings will be reviewed.

What kind of related thera-

pies are being tested or con-

sidered to prevent or stop

the disease? Scientists and

clinicians have been using

insights from cell biology to

develop therapeutic ap-

proaches towards ALS and

the current status of some of

these approaches will be

discussed.

vox as well as Artie Knack, Speech

and Language Pathologist for the

Henry A. Hoenselaar ALS Clinic at

Henry Ford Hospital in Detroit

share their expertise with PALS

and families. Thank you to our fan-

tastic speakers as well as to the

PALS and families who joined us

for these seminars. Your feedback

is always appreciated. kris-

[email protected]. For more

information about speech devices

please contact your ALS clinic or

call Kristen or Denise.

On May 19th and 20th, The ALS

Association Michigan Chapter

hosted seminars featuring dem-

onstrations of speech generat-

ing equipment that can help

improve communication for pa-

tients with ALS. A range of differ-

ent systems was demonstrated,

including eye gaze technology

that allows a person to control

their speech devise with just

their eye movements. We were

fortunate enough to have Joel

Allchin and Kelly Petri of Dyna-

ALS, grants, and third

party events. He

brings a wealth of

knowledge from his

previous role as a ex-

ecutive with the Boy

Scouts. Joe is an Eagle

Scout, lives in Sterling

Heights, and is commit-

ted to the ALS mission.

Joe grew up in the

metro-Detroit, going to

Bishop Foley High

School and receiving

his degree in Communi-

cations from Oakland

University. Joe is cur-

rently considering

working on an MBA and

a CFRE. Joe looks for-

ward to meeting entire

ALSA family and is ex-

cited to start this new

adventure.

Joe Kulwicki is the new-

est member of The ALS

Association, Michigan

Chapter Team. Joe

joined us in May as the

Development Coordina-

tor in the Troy of-

fice. Joe will be provid-

ing leadership to Gears

& Beers, metro Detroit

Walk to Defeat ALS,

Jackson Walk to Defeat

Meet our Newest Staff Member: Joe Kulwicki, Development Coordinator

Stem Cell Therapy Informational Session in Grand Rapids June

Augmentative Communication Technology Seminars Create Awareness

Page 4

Come to the June 24th

Seminar for informa-

tion on stem cell

research and ALS.

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Kelly Petri of Dynavox, demonstrates the VMax,

a speech generating device that can be con-

trolled with a touch screen or eye movements.

June 14th - Coping with a Loved One’s Illness, Featuring Keolebogile Semphadile, Professional Coun-

selor and international doctoral student from Oakland University. 6:30-8:00pm

The ALS Association Michigan Chapter Troy Office

June 24th - Stem Cell Research , Featuring Dr. Merritt K. Taylor, Assistant Professor in Biomedical Sciences

and Cell and Molecular Biology at Grand Valley State University. 6:30 - 8:00pm,

Mary Free Bed Rehabilitation Hospital, 2nd Floor Conference Room

July 15th - Hospice Services in ALS, Featuring In-House Hospice, 6:30 - 8:00pm,

Brighton Lion’s Club

August 4th - Respiratory Issues, Featuring Mark Orlikowski, LRT Branch Manager Airway Hospital, 6:30-8:00pm, Munson Community Health Center Meeting Room

All sessions are free to attend. Please contact Denise or Kristen to RSVP.

Page 5

Educational Conferences Scheduled Throughout Summer

Sun Mon Tue Wed Thu Fri Sat

1 2 3 4 5

6 7 8 9

Kalamazoo SG

7-8:30pm

10

Call In SG 2-3pm

Troy SG 6:30-8pm

11 12

Gears & Beers Ride to

Cure ALS, Ann Arbor

13

Grand Rapids SG

2-4pm

14

Coping with a Loved

One’s Illness—Troy,

6:30-8pm

15

Call in SG

6:30-7:30pm

16 17 18 19

20 21

Bay City SG 6:30-8pm

22 23 24 Survivor’s Lunch 11:30-

1pm , Gaylord SG 2:30-

4:30pm, Stem Cell Re-

search Seminar, Grand

Rapids 6:30-8pm

25 26

27 28

Fenton SG 6:30-8pm

Ann Arbor SG 6:30-

8pm

29 30

June 2010

My name is Mary Kay and I am a 74 year

old ALS patient living in northern Michigan.

Five years ago something strange hap-

pened. It seemed as though all my friends

were going deaf at the same time. No mat-

ter what I said people would ask me to re-

peat, sometimes more than once. I didn’t

realize my speech was so slurred people

could not understand what I was saying.

Not long after that I noticed that my face

was beginning to droop. I didn’t make a

connection between the two conditions.

Looking at my face I thought I had suffered

a little stroke. Since I seemed in good

health I didn’t give it a second thought. Next

I started drooling. Again I didn’t pay any

attention, thinking it was a sign of old age. It

would be close to a year later before I was

to learn the real cause of my symptoms. I

was still not a believer, but a trip to Mayo

convinced me that I did have ALS. My ALS

is bulbar which makes it impossible for me

to speak or swallow.

The long trip home from Mayo gave me

many hours to ponder my predicament. I

thought of my friend who had died of ALS

twenty some years ago. He was totally

paralyzed and unable to speak, lying in bed

in a nursing home. That thought struck fear

in my heart, and also made me realize that

I had a limited time in which to finish any-

thing important that I had not yet accom-

plished.

I made some decisions and wrote my

final list before I reached home. I figured it

was my life, my disease, and I could make

my own rules. I would not dwell on ALS, nor

would I talk about it constantly. If people

asked me how I was doing I would say it

was a good or bad day. Nothing more. I

would resign from the organizations I had

been involved with and spend what time I

had left with my family and friends. I

would get my Trust in order, finish the

book I was writing, and have an ele-

vator installed in our home. I started

praying that God would keep me

calm, positive and productive. I soon

changed that prayer asking to be

calm, positive and patient. My dis-

ease affected many people in addi-

tion to myself. Learning how to be

patient with them is not always easy.

Along the way I learned some

important, and often disappointing

lessons. My biggest disappointment

was how little knowledge the medical

community had about ALS. That set

me off on a mission to educate as

many people as possible. I learned

that I had to be pro-active and crea-

tive. After all, this was my only body

we were talking about and it was very

important to educate myself, not just

about the many unpleasant symptoms,

but also about what equipment was

available and what kinds of help was

available in our part of Michigan. I built

myself a network of helping people

including Denise George my ALS

Michigan Patient Services Coordina-

tor, and a file of equipment informa-

tion. I was ready. When it became too

difficult for me to swallow I knew I

needed to be fed by tube. My family

and friends put together a website

where they could sign up to come help

feed me. I talked with my pharmacist

about which pills could be ground up to

go in my PEG Tube. When I reached

the point that I was regurgitating the

food from the tube which caused chok-

ing and aspirating I knew I needed a

tracheotomy. When my muscles failed

to the point that my mouth would no

longer open wide enough to brush my

teeth comfortably and I was unable to

spit out toothpaste I started using a

child size toothbrush and mouthwash.

Toothpaste made way too much foam

and mouthwash was easier to deal

with. My educational mission for both

myself and others goes on constantly.

Today my arms are beginning to

weaken but my legs are strong. I am

hooked up to a system twenty four hours a

day that keeps my trach well humidified.

Another machine is hooked up in the eve-

ning to feed me by food pump over night. I

need to use a nebulizer four times a day

and an airway clearance vest twice a day.

Each morning and evening someone has to

suction out my trach to keep my lungs

clear, a job that takes about an hour and a

half. It seems my life is controlled by equip-

ment, care, and helping people.

My symptoms have gotten worse in the

past five years but I try to keep my attitude

the same, praying to be calm, positive and

patient. Each day my life is a challenge. I

like to look at it like an adventure in which I

get to make my own decisions.

Back at the time I was diagnosed with

ALS one of the things on my list that I

wanted to accomplish was to finish the

book I was writing. Having the book to work

on was a real blessing for me, giving my

mind a positive place to be every day so I

didn’t have time to worry about my ALS.

Keeping busy and positive has been a very

important part of remaining in somewhat

good health both physically and mentally. I

did finish the book. In 433 pages Torch

Lake, the History of Was-Wah-Go-Ning

includes 673 maps, drawings and old pho-

tographs and a story covering 10,000 years

of life in the area where I live. A major un-

dertaking even for someone in good health.

For me it was a lifetime accomplishment

and a miracle.

A Lifetime Accomplishment : Mary Kay Duffy

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“I did finish the book….A major

undertaking even for someone in

good health. For me it was a

lifetime accomplishment and a

miracle.

Mary Kay Duffy with her book, Torch

Lake the History of Wah-Wha-Go-Ning.

Advocates and PALS who made

the trip to Washington DC last

month had the chance to take in

a new sight— the Piece by Piece

Awareness Campaign, a major

ALS Awareness campaign devel-

oped by the Florida Chapter. The

visual impact of the display is

immensely powerful. It includes

over 200 mannequin “pieces”

that each display an epitaph

representing a Floridian who has

been diagnosed with the dis-

ease. Floridian families spon-

sored mannequins to include

their loved ones as part of the

display.

The message is simple, but

gripping “ALS is stealing our

loved ones piece by piece. Then

it steals their lives”. The display

has traveled to more than 20

locations and draws attention

wherever it goes. In Washington

DC, it was a powerful reminder

to all those who had come for

ALS Advocacy day why we were

there and what was still to be

accomplished. It also provided a

visual display of the devastation

of ALS for lawmakers. It was

proudly displayed in the Naval

Yard area of the capital for the

entirety of the ALS Association’s

Advocacy Day efforts.

For more information on the

Piece by Piece Awareness Cam-

paign, visit

www.stealingpieces.com.

honor of their loved one. Our

homepage featured a link to

follow where a donation

could be made and a virtual

candle lit. Within days, rows

of virtual candles flickered

with stories of those whom

they were lit for beside them.

Family members and friends

wrote notes to loved ones

who’d lost their battle with

With May being ALS Aware-

ness month, The ALS Asso-

ciation, Michigan Chapter

held a candlelight vigil in

honor and in memory of

those whose lives have been

effected by ALS.

All last month family and

friends had the ability to log

on to the Chapter’s website

and set a candle aglow in

ALS and words of encourage-

ment to those still fighting.

May was ALS Awareness

Month. Thank you to every-

one who lit a virtual candle

for sharing your thoughts and

for spreading awareness. It

was amazing to see your can-

dles light up our website. We

hope to continue your aware-

ness efforts year round.

caregivers the feeling that they

are not alone in the caregiving

journey.

“Passages in Caregiving” also

provides an expansive list of

resources and advocacy groups

that are available to help family

caregivers. Although not specific

to ALS, the book provides a

good guide for any family mem-

ber faced with the monumental

task of caregiving for a loved

one who is ill.

At a recent Troy Support Group

meeting one of our Caregivers of

an ALS recommended the book

“Passages in Caregiving” by Gail

Sheehy. This particular caregiver

mentioned the soothing nature

of the book.

“Passages in Caregiving” pro-

vides an informational and

calming guide for caregivers,

assuring them that although

their circumstances are unex-

pected, they are not insurmount-

able. Sheehy seeks to provide

Piece by Piece Awareness Campaign Makes a Powerful Statement

Virtual Vigil Lights up Chapter Website

Recommended Reading: Passages in Caregiving

Page 7

“Passages in

Caregiving” by

Gail Sheehy, was

recommended at

the Troy Support

Group and is

available at

Costco for $15.19.

Light a virtual candle in

honor or in memory.

675 E. Big Beaver, Suite 207

Troy, MI 48083

678 Front Street, Suite 159

Grand Rapids, MI 49504

The ALS Association, Michigan Chapter

Find us on the web:

www.alsa-michigan.org

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Our Mission:

To lead the fight to cure ALS through global cut-

ting edge research, 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.