ISSUE 03 JUNE 2011

Meet At The Diamond

Little Rock Softball Tournament

Stem Cells

Provide A Powerful Research Tool In

Finding New Treatments for ALS

Feeding Tubes

Providing Nutrition For Tomorrow

Meet the Board

Lisa Schimmelpfenning Shares Her Story

FAQ’s About ALS Arkansas

At a recent support group meetings, I pledged to publish some FAQ's (frequently asked questions) so everyone would better understand the role and functions of our board. I appreciated everyone's feedback at the meeting I attended and realized not everyone was fully informed on some of the recent issues. Please continue to submit any questions to our staff. - How can I get more information, provide comments feed-back (positive or negative) going forward? John Lewis and his staff are the best source for information. His most important job function is patient care and he is your advocate. With his background and personal knowledge of the disease, he understands your issues and will bring all concerns to the Board. - Are Board Members paid? No, all are volunteers. - Was former staff fired? No-both former staff members resigned.

- Do we need to choose which organization I receive help from? No, everyone is welcome as long as they respect fellow members and staff. - Should I contact Board Members directly, if I have prob-lems/questions. Again, John and Staff is your first op-tion. If you cannot get an answer in a timely matter, please let John know and he will have the appropriate Board member contact you depending on the issue- i.e. Personnel. Finance, Patient Services, etc. ? - Will Board Members be attending support group meet-ings? In an official capacity, only as guests of John , who is responsible for execution of meetings depend-ing on the subject matter. Thanks again for any and all input! Tony Murphy Personnel Committee

Meet The Board Lisa Schimmelpfenning

Vice President Direct Imports -Administration Wal-Mart Stores, Inc.

In 1993, Lisa joined Wal-Mart Stores, Inc. after a career in Customhouse brokerage with Fritz Companies - Inglewood, California. Lisa served in several capacities within the Wal-Mart Stores, Inc. Import Division and was promoted in January, 2005 to Vice President for Wal-Mart‟s Direct Import Division.

Lisa's responsibilities as VP of Direct Imports include support for all Direct Import pur-chases destined for US Wal-Mart Stores and Sam's Clubs including merchandising sup-port and all financial and customs functions associated with importations into the United States.

Lisa maintains a Customs Brokerage License and participates in a number of import in-dustry related organizations: COAC - US Customs Commercial Operations Advisory

Committee (9th & 10th), BACM - Business Alliance for Customs Modernization, US Customs & Border Protection Trade Support Net-work, RILA Supply Chain Security Committee and RILA International Trade Committee. In addition Lisa has served as past Chair for Oakley Chapel, UMC Fellowship Committee, Outreach Committee, Trustees, Finance Committee, Vision Team, Representative on Youth Council, Council of Stewards and is a board member for The ALS Association Northwest Arkansas Chapter (past Vice President, past Secretary, current Vice President).

Lisa was born in Rockford, Illinois and graduated from Pekin Community High School (Illinois). Lisa received her BA in Business Administration from Illinois Wesleyan University in Bloomington, Illinois and her MBA from the American Graduate School of Inter-national Management in Glendale, Arizona. Lisa and her husband David Messersmith reside in Rogers, Arkansas with their five children: Jessica, Samantha, Ashley, David and Kailee.

Lisa first became involved with ALS through Steve & Sylvia Kressen. Lisa was friends with both Steve & sylvia – worked with both of them & in fact performed as their minister when they were married… When Sylvia started the organization, she asked if Lisa would participate in the board of the start up organization.

Lisa enjoys spending time with her family, the water at Beaver Lake, The arts and concerts, everything from Kid Rock to Andrea Bocelli, as well as shopping and reading. Lisa and her Husband David are awaiting their first grandchild from her Daughter Jessica and her Boyfriend Robert in Mid July.

National Research Updates.

Stem Cells Derived From Skin Cells Provide A Powerful ALS Research Tool

Richard Robinson

“Induced pluripotent stem cells” are poised to become a power-

ful tool for understanding the ALS disease process and for rap-

idly discovering drugs to treat the disease. That was the mes-

sage from Ashkan Javaherian, Ph.D., Senior Scientist at the

biotechnology firm iPierian, a company at the forefront of this

technology, which uses skin cells from ALS patients as the start-

ing point for growing millions of motor neurons in culture.

Dr. Javaherian presented these new developments in an ALS Association Research Webinar in April. The full webinar, includ-ing a Q&A session with participants, is available at https://a l s a . w e b e x . c o m / a l s a / l d r . p h p ?AT=pb&SP=MC&rID=62325022&rKey=e7183ff99c9d3e26

“This is a very new technology, and it has been quickly applied

to ALS. It‟s extremely exciting,” said ALS Association Chief Sci-

entist Lucie Bruijn, Ph.D., who hosted the webinar.

“A fundamental challenge in neurodegenerative diseases is the

lack of appropriate disease models,” Dr. Javaherian explained,

especially in ALS. Motor neurons cannot be simply isolated from

humans the way blood or skin cells can, and unlike many other

cell types, motor neurons don‟t divide. Both these factors have

made it hard to create enough motor neurons to study in the lab.

Stem cells have the ability to grow into all the types of cells of

the body, including motor neurons. But research with stem cells

derived from embryos has been hampered due to ethical contro-

versies.

In 2007, however, a new technique was developed that allowed

researchers to convert skin cells into stem cells, called induced

pluripotent stem cells (iPS cells). “What is so special about

these cells is that when grown in culture, they renew them-

selves, and can produce an unlimited supply of more iPS cells,

and they also have the potential to produce cells of every organ

type,” he said.

That development immediately suggested that it might be possi-

ble to use skin cells from ALS patients to develop iPS cells, and

from them the millions of motor neurons needed to conduct re-

search and search for treatments. This has been the mission of

iPierian, Dr. Javaherian added.

The traditional path to drug discovery begins with a gene from

patients, which is inserted into a mouse, which is then used to

test new drugs, which can then be brought back to humans for

further testing.

With iPS cells, that path is potentially quite different. Skin cells

from many different patients can be isolated, converted to stem

cells, and used to grow many different lines of motor neurons.

Each can be tested against thousands of drugs in a “high-

throughput screen.” The goal is to find a compound that re-

verses some aspect of the disease, such as cell death, signs of

stress, or expression of some disease-related protein.

With enough patient-derived cell lines, he said, “we can do an

„in vitro clinical trial‟ before a patient-based trial, increasing the

potential that one of the drugs brought to humans will work.”

This does not necessarily circumvent the animal testing that is

important for safety however it improves the likelihood that the

compound works in humans.

The company began by focusing on the disease spinal muscular

atrophy (SMA), another motor neuron disease, caused by a

faulty gene. But they are moving ahead with an ALS program

now, collecting patient skin cells and developing iPS cells and

motor neurons.

Ninety percent of all ALS cases are sporadic (that is, not inher-

ited), and it is likely that there are multiple causes of motor neu-

ron loss in this large group of patients. This increases the impor-

tance of having multiple cell lines to test, because a single treat-

ment may work in

some cells and not

others. “This is a

powerful system for

modeling a disease

when we don‟t know

which genes are

involved,” Dr. Java-

herian said.

The group is still

collecting cells, pri-

marily at two medi-

cal centers in the

San Francisco area.

Patients in other

areas may nonethe-

less be able to do-

nate (see below).

Currently, cell lines are being developed and motor neurons

made, and the scientists are testing different markers to use in

the high-throughput screen. At that point, up to 200,000 different

compounds will be tested to determine their effects on patient-

derived motor neurons. Dr. Javaherian estimated they were still

several years away from a clinical trial based on the iPS

screens.

Dr. Bruijn stated that this is potentially a powerful way to find

new drug candidates quickly, and to find treatments that may be

useful in sporadic ALS. “This is a technology with a lot of prom-

ise,” she added and noted that the motor neurons derived from

iPS cells are unlikely to be a valuable source for cell-based

therapies, since they may retain the characteristics that made

them vulnerable to disease. It is also important to note, she

said, that cell-based treatment for ALS is an unproven therapeu-

tic strategy.

May 5th, 2011

The Leader in

Global ALS Research

The ALS Association has committed

more than $55 million to find effec-

tive treatments and a cure for Lou

Gehrig‟s Disease. Our global re-

search effort has helped increase the

number of scientists working on ALS,

advanced new discoveries and treat-

ments, and has shed light on the

complex genetic and environmental

factors involved in ALS.

We had an awesome

support group meet-

ing on May 15. We

talked about ways to

help our patients and

their caregivers “

share the care”.

Meaning, how can

we ease the burden

on families and patients AND make their lives easier while

dealing with ALS? We shared some experiences with different

websites, which ones worked for us and were easy to use, and

which ones seemed outdated or more difficult to navigate, and

how to accept the help of others without being embarrassed

or feeling unworthy. It is very humbling to accept help, but I

promise you people want to help, and this is how you can steer

them in the right direction.

Find someone to help you set up a care site. These sites join

caregivers and friends together to create a care plan for a pa-

tient and their family. Anything from car pools for the kids,

weekly meals, yard work, and doctors appointments are coor-

dinated on a calendar on the site. Then volunteers just log in

to the site and sign up for what activity they want to help with.

There is no embarrassment of asking someone to do a task for

you. It is posted on the site, and it will either be taken by a

volunteer or it won‟t.

Some of the websites that we shared were: www.sharethe

care.org, which helps caregivers create a group to help assist

in care of patients, and www.lotsahelpinghands.com , which

lets you set up a care coordination calendar that your friends

and relatives can sign up for online. By planning ahead and

staying ahead of the disease, our patients will stay more inde-

pendent and live better quality lives. We want our families to

be able to enjoy their days and not worry how the yard will get

mowed or who will pick up the kids from school while they are

at a clinic visit! We will be happy to assist you set up these

sites if you need help.

We have 2 special events coming up in June. These are fund-

raisers benefitting ALS research.

SOFTBALL TOURNAMENT

On July 16, there will be a softball tournament at Bernard Hol-

land Field in Benton for ages 18+, co-ed. Prices are $165 per

team. Call Carol or Rob Putnam for more details at 501-350-

4725 or 501-515-2065.

ULTIMATE FRISBEE TOURNAMENT

On June 18, seniors from Little Rock Christian will be sponsor-ing an event called the Ultimate Fight Against ALS. Check out their website at www.ufaa11.com to register . This is a fun and awesome event that raised $8000 for the UAMS ALS clinic last year. Teams consist of 8-10 players and cost $100 per team. You can also donate online and buy items to spon-sor the event on the website. These teens hosted a fundraiser last week at Larry‟s Pizza and raised over $7000 in tips for their event! Truly an inspiration for all of us! Congratulations to Leigh Green on her art show on May 14

benefitting the Berrington Green Foundation. Mrs. Leigh is a

patient from Sherwood , AR who has amazing artwork and has

created a foundation to provide college scholarships to the

children of families touched by a terminal illness.

Check out her artwork and her funny blog at www.berringtongreenfoundation.com. MDA will be hosting the June support group at the UAMS

Stephens Spine Center 12th floor on June 5 from 2-4pm!!

Our next support group will be on July 10 from 4-6 pm at the

Pleasant Valley

Clubhouse on Arkansas Valley Drive in Little Rock. We would love to see you there!

Did you know that the Little Rock Walk to Defeat ALS

was the top spring walk in our market??

Way to go teams and patient families! We are going to do

awesome things here in Central Arkansas!

Email or call me with any needs or questions!

Love you all, Michelle

Central Arkansas Corner

Central Arkansas Contact:

Michelle Harris

501-773-3832

michelle@als-arkansas.org

Caring Words From Carole

Care Coordinator

Feeding Tubes & Nutrition When an individual is diagnosed with ALS, one of the most important advan-

tages they can give themselves is to get a feeding tube. The decision to get

a feeding tube is very personal, but very important in order to prevent the

debilitating effects of malnutrition and dehydration, as well as gaining back

your strength.

One advantage of getting a feeding tube is that it can be done on an outpa-

tient basis, with sometimes only an overnight stay in order to stabilize dehy-

dration. The time necessary in the hospital depends on the type of feeding

tube that the patient needs.

It‟s very important to clean the stoma site daily. After the first week, soap

and water will suffice, and you can also put a bland ointment around the

area such as zinc oxide to protect it from any moisture that might be pre-

sent.

There are several things you can do in order to prevent potential contamina-

tion of your feeding tube. They are:

Don‟t use blended foods because of the high microbe level. Com-

mercially sterile, full strength formulas are the best.

If you are having problems with GI tolerance, don‟t dilute the for-

mula with water, just reduce the administration rate.

If you need to add medication to the feeding tube, ask your Doctor if

the medication necessary comes in liquid form.

Please call the ALS Association of Arkansas if you need information regard-

ing sources for Nutritional support. Most can be delivered your home from

various companies.

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WE HELP! Who Are Social Workers

Carole Haws - Care Coordinator

carole@als-arkansas.org

Social work is a profession for those with a strong desire to help improve people’s lives. Social workers assist people by helping them cope with issues in their everyday lives, deal with their relation-ships, and solve personal and family problems. Some social workers help clients who face a disability or a life-threatening disease or a social problem, such as inadequate housing, unemploy-ment, or substance abuse. Social work-ers also assist families that have serious domestic conflicts, sometimes involving child or spousal abuse. Some social workers conduct research, advocate for improved services, engage in systems design or are involved in planning or policy development. Many social work-ers specialize in serving a particular population or working in a specific set-ting. Find Out More: www.socialworkers.org

Carole & Payton (Daughter)

There are currently 220 open ALS trials !

Are you wanting to get involved….check out the website

ALS ASSOCATION - ARKANSAS CHAPTER STAFF

John Lewis - Executive Director

john@als-arkansas.org

Cody Steussy - Administrative Assistant

cody@als-arkansas.org

Carole Haws - Care Coordinator

carole@als-arkansas.org

Michelle Harris - Little Rock Coordinator

michelle@als-arkansas.org

Ideas...

ALS Arkansas is always look-

ing for your great ideas for

fundraising and awareness.

We love jumping in and help-

ing you get these events off

the ground...do you have

some ideas?

Email

fundraising@als-arkansas.org

Upcoming Events

ALS ASSOCIATION - ARKANSAS CHAPTER

1113 WEST POPLAR

ROGERS, AR 72756

P: 479.621.8700

F: 479.621.8701

WWW.ALS-ARKANSAS.ORG

June 5 - 2p - MDA Support Group (Stephens Spine Center, Little Rock)

More Info Visit: www.mda.org

June 18 - TBA - Ultimate Frisbee (Little Rock)

More Info Visit: www.ufac11.com

June 20 - 5:30p - Support Group (1113 West Poplar, Rogers)

More Info Email: Cody@als-arkansas.org

July 10 - 4p - Support Group (Pleasant Valley Clubhouse, Little Rock)

More Info Email: Michelle@als-arkansas.org

July 16 - 8a - Softball Tournament (Bernard Holland Field, Benton) More Info Call David: 501-515-2065

July 22 - 7a - Walk to Defeat ALS© Corporate Breakfast (TBA)

More Info Email: Cody@als-arkansas.org

Oct 1 - 9a - Walk to Defeat ALS ™ (Arvest Ball Park, Springdale)

More Info Email: Cody@als-arkansas.org