Winter 2013 MSConnection

winter 2013 Delaware chapter

MS connection newSletter

inSiDe thiS iSSUe

03reaDathon: a Money Maker for yoUr School

07new MS oral MeDication approveD

10fall eventS: annUal Meeting anD b2b

11chapter newS: fight like a girl

with a little SUpport

reaD aboUt Maria Mccabe, Delaware chapter’S new chairwoMan of the boarD, anD her hUSbanD Mike Mccabe’S joUrney with MS. page 4

L409155_Winter2013.indd 1 11/14/12 1:01 PM

02 MS connection: SuMMer 2012

letter froM the preSiDent

at year’S enD...As the year comes to a close, it is a great time to reflect on the progress we have made as a Chapter. Also, I am sure that you, as a member of the Delaware Chapter, want to know that our hard earned dollars are going where they are needed the most. While our 2012 audit is still being prepared, the pie chart (seen left) gives you an overall break down of how your hard earned fundraising dollars are allocated.

Additionally, here are some other points of pride for us in 2012:

• Over 1,000 volunteers donated their time, energy, and talents over the past year to help make our office, events, and programs run smoothly!

• Approximately 8,000 passionate event participants walked, ran, cycled, in our events, raising about $1.8 million dollars.

• We were able to provide quality programs and services and emergency financial assistance to Delawareans living with MS.

Finally, the National MS Society remains committed to finding a cure for MS. Last year, they invested over $42.6 million on the most prom-ising MS research projects around the world. There is progress being made. You can read about the new oral MS treatment option available on pg. 7.

Still, there is so much more progress to go and together we can create a world free of MS! Please join us in 2013 – volunteer, participate in an event, seek out a program or tell a friend about the great work being done by the Delaware Chapter.

Sincerely,

Kate Cowperthwait Delaware Chapter President

Kate

connect with US online:

Delaware Chapter MSDelaware.org

Like us: Facebook.com/ MSDelaware

Follow us: @MSSocietyDE

Watch us: Youtube.com/ MSSocietyDE

48%Client and

Community Services

31%National Programs

and Research

14%Fundraising

7%Management and General

L409155_Winter2013.indd 2 11/14/12 1:01 PM

03nationalmssociety.org | 1-800-344-4867

fight ms and raise funds for your schoolReadathon is a program created to encourage reading, pro-mote community involvement, raise disability awareness, and aid in the fight against MS. Children are asked to read books for one month and obtain pledges from family and friends for each book that they read. Schools even have the option to keep 40% of what the students raise as a school fundraiser!

Readathon is a year round program - schools, libraries, and individual children are able to pick any month to participate - most schools select March, National Reading Month. Schools and libraries that raise a certain amount of money are eligible to receive cash rewards, provided by grants from Laffey-McHugh Foundation and DuPont, to buy books, educational materials, and more. For more information or to sign up now, contact [email protected] or call (302) 655-5610 or 1-800-FIGHT-MS.

“our school has participated in the reada-thon for years because it’s a win-win situation for all involved.” - readathon school principal

national multiple sclerosis societyDelaware Chapter 2 Mill Road, Suite 106 Wilmington, DE 19806 1-800-344-4867

Chairwoman: Maria McCabe Chapter President: Kate Cowperthwait Editor: Stephanie Fitzpatrick

© 2012 National Multiple Sclerosis Society, Delaware Chapter

Information provided by the Society is based upon professional advice, published experi-ence and expert opinion. Information provid-ed in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recom-mends that all questions and information be discussed with a personal physician. The So-ciety does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

L409155_Winter2013.indd 3 11/19/12 4:30 PM


With a LittLe Support In November, Maria McCabe became the new Chairwoman of the Delaware Chapter Board of Trustees. To her, the mission to create a world free of MS is a personal one, as her husband Michael McCabe was diagnosed with Primary-Progressive MS in 1985.

“Mike had MS when we met but nobody who looked at him would have known he had MS. He could walk. We danced at our wedding,” recalled Maria.

Michael McCabe is not only a well-respected environmental consultant (with clients such as Dupont), a former aide to Senator Joe Biden and a former Deputy Administrator of the EPA, but also a loving husband and father of two.

“MS haSn’t Stopped Me, but it haS SLoWed Me,” Said MichaeL Mccabe.

He could trace symptoms back to his teenage years. But, when he noticed the symptoms worsening, he insisted on being tested notwithstanding several refusals to test from his HMO. Despite the relief that came from finally knowing it was MS, like many, he faced the fear and uncertainty of what the course of the disease would look like.

“Back then there were no drugs. We have come a

long way in terms of diagnostic tests, but also awareness about the symptoms, and treatments” continued Mike.

He never let the disease damper his career and for a long time Mike was able to travel to and from Washington, D.C. independently. As the MS pro-gressed, he has continued to work through sheer determination and adaptation.

“On one of my trips to Washington, my scooter stopped dead,” recounted Mike. “I had to be pushed into Macy’s in the cosmetic area until someone could pick me up. Now I travel with an assistant – I am fortunate enough to be able to do that. From a psychological standpoint it’s a constant challenge to maintain the positive outlook and keep moving in a positive direction. With each loss you have to adjust and adapt, and look at the full picture.”

From Maria’s perspective, it’s Mike’s hope that has kept him moving.

“Mike is a very hopeful person. That’s a choice. When you have multiple sclerosis you have to make that choice or it is very, very hard,” she added.

He and Maria have not only grown in each other’s loving support, but through the embrace of the community at the Delaware Chapter.

“Whether it’s Bike to the Bay, volunteering for as-

cover Story

L409155_Winter2013.indd 4 11/19/12 4:32 PM


sistance programs with MS patients, or helping to raise funds, knowing that there is this collective community of support helps people like me realize we’re not alone,” said Mike

Turning Passion inTo acTionIn recognizing the importance of the MS Society, the family has been actively involved at the Chapter.

“My goal [as the new Chairwoman of the Board] is a cure. Period. We have to act as though it is our job to make a cure happen. Anything less than a cure is not enough,” exerted Maria. “Along the way, we have to make sure that people with multiple sclerosis have every opportunity to live a full and satisfying and complete life. I don’t want someone to feel alone or like they are going to have to deal with the fear on their own. Be-cause the other side of it is, we have a good life.

Maria also hopes to educate other leaders in the orga-nization about what it is like to live with MS. At the last board meeting, she even had each member put on oven mitts so that they could experience what it is like to have difficulty picking up a fork, or pen.

“It’s so difficult to not remember the last time you could stand up. To come into a cocktail party and not be able to see people because you’re in a wheelchair. To realize that when people look at you, they don’t see you they just see the disability,” she continued.

Maria adds that it is really important for people in care-giving roles to be patient with themselves, take care of themselves and find joy in everyday, too.

“Not only does Maria’s leadership position mean a tremendous amount to me, but also to my chil-dren. To see that their mom helps me, plus puts

LocaL suPPorT for msAs Maria and Mike’s story demonstrates, living with MS can be a daily challenge. Many times you may be reminded of limitations that require you to find other ways to perform some tasks.

Easter Seals of Delaware and Maryland’s Eastern Shore has a Resource Center where you can see a variety of devices to aid with daily living. The Center is located in the New Castle facility and is free and open to the public. For more informa-tion, visit their site at http://de.easterseals.com/site/PageServer?pagename=DMDR_RTC The Delaware Assistive Technology Initiative also has a variety of tools to help people with a disabil-ity to learn, work, play and live in their commu-nity. Visit their website at http://www.dati.org/

Your local Lions Club can often provide durable medical equipment, at little or no cost. To find a club near you, visit the Lions Club website http://www.lionsclubs.org/locator/lions/search_form_state_results.php

There are many ways to get a job done! Feel free to call the office at (302) 655-5610 or 1-800-FIGHT-MS to talk about ways to get the support you need.

time and effort into helping others so that we can find a cure and other families don’t have to go through this. I’m very proud of her and think she will be a great leader,” insisted Mike.

“There is going to be a cure. It would be great if we could dance at our 50th wedding anniver-sary,” said Maria McCabe.

read maria and mike’s comPLeTe sTory aT www.msdeLaware.org

L409155_Winter2013.indd 5 11/19/12 4:32 PM


newly DiagnoSeD

check Up on yoUr health When I think of my health, multiple sclerosis dominates my thoughts. I run through my inventory of symptoms that are acting up and medications that are causing side effects. Usually, it’s only when I have something like a cold or a stomach virus that it occurs to me that there is more to my physical health than my MS.

Unfair as it might seem, people with MS are subject to the same health problems as people who are not living with the disease. We have the same lifestyle and aging issues. We have to consider preventive care for things like heart disease, high blood pressure and cholesterol as we age. Women need to get mammograms and pap smears on a regular basis. We need to keep up with immunizations, as well as visits to dentists and eye doctors. (Visit www.nationalMSsociety.org/ preventivecare for preventive care recommendations.)

There are also special risks that we have that are directly or indirectly related to our MS, such as:

• Osteoporosis: People with MS are more likely to have osteoporosis (loss of bone density). This is due to a number of factors, including limited mobility, low levels of vitamin D (which is essential for calcium absorption) and excessive use of corticosteroids (for instance, many Solu-Medrol courses over a short period of time). Your doctor can order a bone scan to test for osteoporosis.

• Depression: Depression can be a primary symptom of MS. It can also be indirectly caused by the losses and unpredictability of MS. Your neurologist or general practitioner should be able to refer you to a psycholo-gist or psychiatrist to treat your depression, preferably one with experience treating patients with MS.

• Vitamin deficiencies: People with MS tend to have low levels or deficiencies of vitamin D and vitamin B12. Ask your general prac-titioner about tests and a treatment plan if needed.

Make an appointment to see your regular doctor and get the rest of yourself checked out. The last thing that any of us needs is additional health problems that could have been caught early or prevented by taking action.

Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and www.ms.about.com. Originally published at blog.nationalMSsociety.org.

L409155_Winter2013.indd 6 11/14/12 1:01 PM


The U.S. Food and Drug Administration has approved teriflunomide once-daily pills (Aubagio,® Genzyme, a Sanofi company) to treat relapsing forms of MS. This is the second oral disease-modifying therapy approved for the treatment of multiple sclerosis. The therapy is expected to be available for prescription by October 1, 2012 in the U.S. The company has also applied for regulatory approval in other parts of the world.

“We are greatly encouraged to see a new oral therapeutic option become available to people living with MS,” advised Bruce A. Cohen, MD, Professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern University’s Feinberg School of Medicine, and incoming Chair of the Na-tional MS Society’s National Medical Advi-sory Committee. “As with any new therapy, the long-term safety of Aubagio will need to be carefully monitored,” he added. Dr.

Timothy Coetzee, Chief Research Officer at the National MS Society agreed. “With the collaborative research underway around the world today, this is an extremely hopeful time for anyone who is diagnosed with MS.”

Taking a disease-modifying therapy is cur-rently the best way to reduce MS disease ac-tivity and future deterioration. Selecting an MS therapy should be done by people with MS in collaboration with their MS doctors, taking into account a variety of factors, in-cluding the effectiveness of any therapy they are currently using, and weighing potential risks and benefits, costs and lifestyle factors.

Read more about disease-modifying thera-pies and other treatments for MS and MS symptoms and the Society’s efforts to speed research in progressive MS at nationalMS-society.org.

reSearch

fDa approveS new oral MeDication to treat relapSing forMS of MS

L409155_Winter2013.indd 7 11/14/12 1:01 PM


continued froM page 7

at-a-gLanceWhat iS aubagio?Aubagio (pronounced oh-BAH-gee-oh) is a small molecule that inhibits the function of specific immune cells that have been implicated in MS. It is related to leflunomide, a drug used to treat arthritis. Aubagio can inhibit a key en-zyme required by white blood cells (lympho-cytes), reducing the proliferation of T and B immune cells active in MS and also inhibiting the production of immune messenger chemi-cals by T cells. It is not thought to affect resting immune cells that are not in an activated state.

What typeS of MS iS aubagio approved to treat?The FDA has approved Aubagio for the treatment of patients with relapsing forms of MS. In other words, people who experience periodic MS at-tacks, such as those who have relapsing-remitting MS or secondary-progressive MS with relapses.

What WiLL aubagio coSt?The price has not been announced, but the ac-tual cost to an individual who has MS will de-pend on the provisions of his or her insurance coverage and the degree to which that individu-al will be eligible for programs designed to assist with out-of-pocket costs.

Where can i get inforMation about the Support that genzyMe WiLL provide to heLp patientS?For more information about support ser-vices provided by Genzyme, people can call the company’s MS One To One line at: 1-855-676-6326, or visit the company’s web-site: MSOnetoOne.com.

iS aubagio being teSted in progreSSive MS?Not at this time.

Why aren’t there More treatMentS for progreSSive MS?Virtually every therapy approved for relaps-ing MS has been tested, or is now in testing, in people with progressive forms of the disease, including primary-progressive MS and second-ary-progressive MS. Up to now, clinical trials involving people with relapsing MS often rely on counting relapses or doing MRI scans to de-tect immune activity. The fact that there is no easy way to detect progression quickly is one reason why drug development for progressive MS is behind. Right now there are large clini-cal trials going on in progressive MS, including tests of Tysabri,® Gilenya,® Ocrelizumab, and Masitinib.

Aubagio is a registered trademark of Genzyme, a Sanofi company

Gilenya is a registered trademark of Novartis

Rebif is a registered trademark of EMD Serono and Pfizer.

L409155_Winter2013.indd 8 11/16/12 11:47 AM


tributes & memorialsJuly 10, 2012 –Oct. 1, 2012

in honor of...Jim & Beth Egnor Jonathan & Patricia Jeffery

Robert & Maria Merritt Jonathan & Patricia Jeffery

Robert Merritt’s 60th birthday Robert Martino

Jack Allman Kay Eckert Rob Poppiti and Kristin Dugan’s marriage

in memory of...Jack Culver Deborah Hohlt

Dr. Thomas F Celello H Patricia Hurka Paul & Faith Silver Veronica Eid Carol J Dulin, Esq. The Simon Family

Malcolm J Styer, CPA, LLC King & Spalding Mark & Jean Chen Richard & Elizabeth Bacon Hershey & Lew Schloss Angela Boyle Leslie & Ed Goldenberg The Profitas Julian & Karen Baumann Ted Hester & Amy Dunbar Arlene Bowden-Williams Carol Callaghan Pamela & Gary Gradinger June Zappa Megan & Dean Sheehan

Mary G Marcus Joan Bozel Alice & Arnand Zinnato Betty & Tim Salton Glenn & Donna Scimonelli Susan & Michael Jenkins

Betty Lawson Allman Kay Eckert

My husband Joseph H Kaczmarski Katherine Kaczmarski

Ruth Hollingsworth Elwood Rice

creative Ways to giveHere are some creative ways for you to join the movement to create a world free of MS this holiday season:

• Donate your car to the Delaware Chapter.

• Donate your old phone or other unused electronics (we have a drop box in the office).

• Conduct a “Do-it-youself-event”.

• Make a donation to the Delaware Chapter in lieu of sending holiday cards or gifts.

for more information and creative

fundraising ideas, call (302) 655-5610 or

1-800-fight-ms. or, visit WWW.msdelaWare.org.

See photos from the PNC Thanksgiving Day Run/Walk for MS, MSquerade 2012, and other fall events at www.facebook.com/msdelaware.

L409155_Winter2013.indd 9 11/16/12 11:48 AM

MS connection: SuMMer 201210fall events

annual meetingThe 2012 Annual Meeting was held on Oct. 27th at the DelTech, Dover Campus. This year we welcomed new Board of Trustees Chair, Maria McCabe and new Board Members Jim Lardear, Tina Pario, and Lisa Vitanza.

2012 Award Recipients Corporate Award - Winner Autoworld Communications Award - Clear Channel Volunteer of the Year - Danny Shivers Friends of the MS Society - Linda Sieber, Janet and John Foltz, Alyssa Lee, TD Bank, Buffalo Wild Wings

The Bernice Schacter Research Symposuim took place that same afternoon and was broadcast at the Georgetown and Stanton campuses. Dr. Jason Silversteen delivered the keynote speech and a panel discussion with MS experts conclud-ed the symposium. Learn more about the award recipients at www.MSDelaware.org.

tracy walls-Pulling, B2B vOlunteer finish line cOOrindatOr and 2012 hOPe award reciPient

thank yOu cyclists! Bike ms: Bike tO the Bay 2012 is well On its way tO raising $975,000. funds can Be turned in until the end Of the year. visit BiketOtheBay.Org fOr mOre PhOtOs and infOrmatiOn.

B2B draws nearly 2,000 ParticiPants

what cyclists are saying...“2012 B2B seemed to have more volunteers, copious

and better food, smiling volunteer faces all over, and a great finish area. The only negative I heard on road chatter was the wind, which MS did not order.” – Ed Pankowski, Veteran Cyclist

“I wanted to let you know after riding in my 1st Bike to the Bay this year how impressed I was with the whole event! It was so well organized, from the start to the finish line and every rest stop in be-tween. The S.A.G. cars and bike repair vehicles along the route were never more than a few min-utes away when needed. This was a first class day!” – John McDermott, New Cyclist

L409155_Winter2013.indd 10 11/20/12 12:16 PM

nationalmssociety.org | 1-800-344-4867 11MS ScholarShipS - apply now!The Delaware Chapter’s scholarship program is now open. This program helps highly qualified students – either with an MS diagnosis or with a parent with MS – to achieve their dream of going to college. Scholarship applications for 2013 are now being accepted through January 15, 2013. Scholarship America will send renewal forms to previous recipients beginning December 17, 2012.

For guidelines and application information, visit www.MSDelaware.org.

reMeMber the MS Society at tax tiMeYour 2012 Delaware tax returns will include an option to donate to the Delaware Chapter.

Thanks to the success of this relatively new pro-gram, we received almost $10,000 from Delaware tax-payers in 2012! To make your mark in 2013, see DE Schedule III – Contributions to Special Funds and be sure to check the box for the MS Society!

Noble’s Pond’s Girls Night Out took place on September 8, 2012 and raised over $10,500 for the Delaware Chapter!

Save the Date, September 21, 2013, for next year’s event. Pictured Left (left to right): Event organizers Mary Field, Colleen Evans, and Colleen Ostafy presenting the check to the Delaware Chapter staff Kate Cowperthwait and Stephanie Fitzpatrick

woMen againSt MS

fight like a girlWomen Against MS (WAMS) took place on October 3, 2012 and raised over $20,000 for the Delaware Chapter!

Pictured Right (left to right): Chair-woman of WAMS Planning Committee Joey Hertrich, Chapter President Kate Cowperthwait, Keynote Speaker Annie Coons, Immediate Past Chairman of the Board Carl Hertrich.

chapter newS

L409155_Winter2013.indd 11 11/14/12 1:01 PM

Team Up

walk ms 2013Are you ready to be a leader in the MS Movement? Become a Walk MS Team Captain or join a team today! Being a part of a team is an

opportunity to inspire, celebrate, and come together as a community to achieve a world free of MS.

Forming a team is easy! Designate a team captain, make up a fun team name, and register online at DelawareWalk.org by choosing the option to “create a new team” or call (302) 655-5610. or 1-800-FIGHT-MS. Pictured above: Team Zoom Zooms, captain by Jamie and Monroe Colvett, Baywood Green’s largest and highest fundraising team in 2012.

save The DaTes Wilmington Riverfront

April 13, 2013

Historic DoverApril 20, 2013

University of DelawareMay 5, 2013

Heritage ShoresMay 31, 2013

Baywood GreensJune 7, 2013

Delaware Chapter 2 Mill Road, Suite 106 Wilmington, DE 19806

L409155_Winter2013.indd 12 11/14/12 1:05 PM

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Permit # 246Wilmington, DE

Documents

Winter 2013 MSConnection