TMA Newsletter Volume 10 Issue 2 – Fall 2012

7/30/2019 TMA Newsletter Volume 10 Issue 2 Fall 2012

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THE TRANSVERSE MYELITIS ASSOCIATION NEWSLETTER

...advocating for those with acute disseminated encephalomyelitis,neuromyelitis optica, optic neuritis and transverse myelitis

Volume 10 FALL 2012

IN THIS ISSUE

EdITorS ColUmN

UpComINg Tm STUdy

TmA-SUpporTEd rESEArCH

TmAS FIrST lUBIN FElloW

2012 loNdoNS pArAlympICS

FIrST BErlIN myElITIS SympoSIUm

BlUE ANgEl CooKIES

Tm AWArENESS IN gEorgIA

WE WAlK For CollEEN FUNdrAISEr

TmA FAmIly CAmp @ THE CCK

TmA KIdS!

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TmAS NEW WEBSITE! 0203

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04

0506

07

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0809

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Page 1 Fall Newsletter

the traNsverse myelitis associatioN

Dear Readers,

he ransverse Myelitis Associationhas witnessed enormous changes andaccomplishments over the past six months.

An important part o the process o transorming theMA rom an all-volunteer operation has been to growa more seasoned and involved Board o Directors. Iam so honored to share with you passionate leadersrom our community who have joined us in thisadventure. Linda Malecky, mother o a child with M,

has joined us as the reasurer and Board Member othe MA. Linda has an MBA with a specialization innance. Barbara Sattler, a retired judge rom Arizona,and our support group leader in ucson, was addedto our Board and oers legal counsel or the MA.Bruce Downey brings a wealth o knowledge to ourBoard with a background in law and many years oexperience in the pharmaceutical industry and the

SANDY SIEGEL

business world. Drs. Ben Greenberg, Carlos Pardoand Doug Kerr will be serving on the Board, bringingtheir many years o expertise in medicine and theirunique experiences in our community. We held ourrst ormal Board meeting in August at Johns HopkinsUniversity in Baltimore. During that meeting, ChitraKrishnan was also voted onto the Board o Directors.Jim, Debbie and I will remain ocers and members othe Board o Directors. We are very excited about theaddition o such a dedicated group o accomplishedindividuals. We have also begun a new and

wonderul relationship with a Health and Economicsspecialist rom Amsterdam, Roberta Pesce. You canlearn more about all o them on our new website(http://www.myelitis.org/about/oicers-and-sta).With change and new arrivals, oen we must saygoodbye to a ew o our riends. Aer serving ormany years as the treasurer o our organization, PaulaPeltier has stepped down to begin a new chapter in herlie in Caliornia. Hannah Harter has also moved on toanother position.

As we grow the organization, we need your supportand are looking or volunteers and interns. I we aregoing to succeed in our mission, we are going to needto more directly engage our members. You have theskills, expertise, and experience that we need. Pleaseget involved.

Te MA has a new web site that will make it easieror you to nd the inormation you need. Our websitealso includes a new eature, which was developed

through our partnership with raitwise. Tis tool isan interactive questionnaire that provides instanteedback to the participant by communicating howyour responses compare to other people who haveanswered the same questions. You will learn a greatdeal through your participation, and you can makean enormous dierence in how well clinicians andresearchers understand your disorder. It is critically

THE EdITorS ColUmN


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Page 2Fall Newsletter


important that all o our members visit the newwebsite, ll out the membership orm (even i youare currently a member), and make a commitment tobecome a regular participant in this survey process.Trough this inormation, we can acilitate newresearch and clinical trials by making the MA a more

eective partner in recruiting or these studies. It isalso important or everyone to update your contactinormation in the membership orm as many o youhave changed this inormation since you rst becamea member o the MA.

As you may have noticed, this newsletter is a bitdierent rom the journal. o be in more constantcommunication, we will be publishing newsletters inthe spring, summer and all o every year and we willpublish our journal in the winter. We will continue

to provide the same content as we have in the past,including updates on research, inormation aboutour centers o excellence, educational opportunities,as well as inormation about our organization andour community. We are going to be sending moreinormation to our community via emails, so it is veryimportant that you keep your contact inormation

current. We are also going to be sending more timelyinormation to you, more requently, through emails,blogs, and on our web site. We are suspending thedistribution o the membership directory, as the costo this publication has become prohibitive, and theinormation is too sensitive to send or make available

electronically. We are going to be depending on oursupport group leaders to help people who want toconnect with others rom their communities or to ndothers with their disorder. We will also be relying onsocial media, such as our Facebook communities, tohelp us in this capacity.

Tis all newsletter contains a wonderul article aboutthe paralympians who are participating in Londonrom our community. Tey remind everyone in themost proound ways that getting one o these disorders

is not the end o lie, but the beginning o a new way olie that can be lled with dreams, positive aspirations,opportunities and achievement.

Please take care o yourselves and each other,[email protected]

We have launched a new website! Te redesigned site willmake it easier or you to nd all the latest news about theMA, clinical trials and studies, inormation about the

disorders, and much more. Check it out on http://www.myelitis.org!

Please sign up again i you are already a member and update your

membership inormation by completing our newly designedmember survey made possible by a partnership with raitWise onhttp://www.myelitis.org/join.

We look orward to sharing the latest inormation on research andeducation opportunities and keeping in touch!

WE HAvE A NEW WEBSITE!


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UpComINg STUdy For IdIopATHIC Tm pATIENTSMaureen A. Mealy, RN, BSN, MSCN and Michael Levy, MD, PhD

he current standard o care or people witha history o idiopathic transverse myelitis issupportive and aims to manage and alleviate

symptoms o the disorder. Tere are no therapies totreat the demyelination or loss o myelin (the insulatingmaterial on nerve bers); rather clinical care is ocusedon helping to live with the consequences.

Te Johns Hopkins ransverse Myelitis Center inBaltimore will begin recruiting this all or winter ora clinical trial to assess the response o idiopathic Mpatients to a drug called Dalampridine, a sustained-release potassium channel blocker that has been shownto be eective in improving gait and other neurologicunctions in multiple sclerosis. Tis drug has thepotential to improve gait and neurologic unction inpatients with transverse myelitis as this rare disordershares a similar pathogenic process with multiplesclerosis.

Recently, Biogen-Idec and Acorda have teamed up in

the development o a sustained-release ormulationo ampridine, called dalampridine, which maintainsstable plasma concentrations o the drug and avoidstoxic doses that can lead to seizures. Te FDAapproved dalampridine or use in multiple sclerosisin 2009 based on the key study that evaluated theimprovement in gait in the responder cohort o patientsrather than the entire study population. Tis methodo analysis ocused on those who reported somebenet rom dalampridine in an initial 4-week trialperiod and re-assigned those who did not see benet

to the non-responder group. In contrast to MS, whichaects the entire central nervous system, M aectsonly the spinal cord, largely spares the brain, and isnot associated with an increased risk o seizures. Inaddition to being a potentially saer cohort o patientsor dalampridine, M is a more homogenous diseasemodel in which to test dalampridines mechanism oaction.

Te study requires weekly visits to the site overa 6-month period to test walking speeds andother outcome measures. Only adult patientswith a diagnosis o idiopathic M are eligible orrecruitment. Please contact Maureen Mealy [email protected] i you are interested inlearning more about the study.

ASenate Resolution, co-sponsored bySenators James, Davenport, Davis, Seayand Fort declared February 15, 2012 in

Georgia - M Awareness Day. Te orce behindthis eort, Kim Harrison, was diagnosed withransverse Myelitis (M) in October 2004 at theage o 45. Kim, a resident o Atlanta, is activein a support group in her community. She alsoparticipates in the Shepard Centers TerapeuticRecreation Program. Kims work has helped toraise awareness o the rare neuro-immunologicdisorders throughout the state o Georgia. We aredeeply grateul or her eorts.

Tm AWArENESS dAy IN

THE STATE oF gEorgIA


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In 2011, Dr. Adam Kaplin at Johns HopkinsUniversity was awarded a grant to evaluate thetherapeutic potential o carbenoxolone (CBX) or

the treatment o ransverse Myelitis. Patients withtransverse myelitis (M) and multiple sclerosis (MS)are commonly aected by cognitive impairment, butno treatments exist to target this aspect o the disease.CBX is a drug approved to treat peptic ulcers in theUnited Kingdom. In some early studies conductedin Dr. Kaplins laboratory, mice were immunized toinduce experimental autoimmune encephalomyelitis

(EAE), an animal model o MS, and administered dailyintraperitoneal injections o CBX or control rom thetime o disease induction. Animals treated with CBXexperienced delayed onset and decreased severity oEAE compared to control animals. Te results o thisanimal model study support the use o CBX as an orallyavailable potential therapeutic treatment to reducemotor impairment in patients with MS and M.

A second potential therapeutic agent was also studied

in the laboratory. Data collected rom relapsing-remitting MS patients at Johns Hopkins Hospitaldemonstrated a relationship between perormance ona battery o cognitive tests and the level o a specicpeptide, N-acetyl aspartyl glutamate (NAAG), inthe hippocampus, a region o the brain well-knownor its role in learning and memory unctions. Morespecically, patients who did better on the cognitivetests had higher hippocampal NAAG levels. It washypothesized that pharmacological upregulation oNAAG would be an eective method o reversing

cognitive impairment in patients with MS and M.Using an animal model (experimental autoimmuneencephalomyelitis, EAE) and tests o learning andmemory, cognitive perormance was measuredollowing treatment with the drug 2-PMPA, a drugpreviously demonstrated to elevate NAAG levels. woindependent experiments conrmed that 2-PMPA-treated mice had improved cognitive perormance

compared to controls. Brain analysis revealed asignicant increase in NAAG levels o 2-PMPA-treatedmice. In summary, these animal model data supportinhibition o GCPII or the treatment o cognitiveimpairment in MS and M. Tese early results inanimal models o the disease are currently beingrepeated and veried ollowing which human studieshave to be designed or testing.

Dr. Daniel Becker, Kennedy Krieger Institute inBaltimore was also awarded a grant in 2012 or his

study to evaluate change in unction (spasticity,strength, and sensation) and change in cerebrospinalfuid (CSF) infammatory milieu in individuals withinfammatory myelopathies in response to unctionalelectrical stimulation (FES) cycling therapy to identiythe optimum dose to elicit neurological repair. Sincethe award o the grant, institutional review boardapproval has been obtained or the proposed clinicaltrial and to-date, 9 patients have been enrolled in thestudy, eight o whom have completed the study. Tere

were 4 patients with a history o M, 3 patients withMS and 1 patient with NMO. Tere was one screeningailure. Tere were no adverse clinical events notedto-date. Te total number o subjects proposed in thestudy is 16.

Te study is enrolling people with transverse myelitis,neuromyelitis optica, and multiple sclerosis. Testudy involves coming to Kennedy Krieger Institute inBaltimore or a total o 3 weeks. Participants will usethe FES bike either once, three times, or ve times per

week. At the beginning and at the end o the study,participants will undergo a detailed clinical examin addition to blood draw and spinal tap. I you areinterested in participating, please contact ShannonInches at [email protected]. Tis datawill be crucial or the design o phase 2/3 clinicaltrials evaluating the ecacy o FES in patients withinfammatory myelopathies.

AN UpdATE oN TmA-SUpporTEd rESEArCH


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It is a great honor or the MA to announce Dr. AllenDeSena at the University o exas Southwesternin Dallas is the rst recipient o the two-year

James . Lubin Clinician-Scientist Fellowship Award.Mentored by Dr. Benjamin Greenberg, Director o theM and NMO Centers at USW, Dr. DeSena will beocusing on pediatric M, NMO, and ADEM.

Dr. Allen DeSena attended medical school at Loyola-Stritch School o Medicine in Maywood, Illinois,located in the greater Chicago area. From there, hewent on to complete a residency in general pediatricsin New Orleans at the ulane-Ochsner pediatricprogram, and he earned his board certication ingeneral pediatrics in 2009. Following his generalpediatrics training, he moved to Dallas where hecompleted a residency in pediatric neurology atU-Southwestern Medical Center in conjunctionwith Childrens Medical Center-Dallas and ParklandMemorial Hospital. During that time, his interest intransverse myelitis and other neuro-immunologic

disorders blossomed, and he pursued urther trainingin those areas. In 2012, he was awarded the rst James. Lubin ellowship to pursue a clinical and researchcareer specializing in rare neuro-immunologicdisorders ADEM, M, NMO and ON. He is the rstpediatric neurology ellow to study the rare spectrumo neuro-immunological disorders, with a particularocus on ransverse Myelitis.

During his two-year ellowship, Dr. DeSena will beleading an acute treatment clinical study in transverse

myelitis to compare the eectiveness o plasmaexchange (PLEX) and intravenous immunoglobulin(IVIG) as treatments to stop the infammatory attackin transverse myelitis. Dr. DeSenas research alsoocuses on identiying and developing robust outcomemeasures to assess the eectiveness o therapiesand return to unction. Trough the eorts o PeterJacobson and the generous support o our members,

we are able to und the rst year o Dr. DeSenasellowship. As we continue to raise the unds or thesecond year o Fellowship training, we need your help!I you have a child with ADEM, NMO, ON or M,supporting the training o Dr. DeSena is a very directinvestment in your childs uture medical care. We urge

you to get involved in this critically important eort!

We are so incredibly proud to announce Allen as ourrst James . Lubin Fellow. Many amilies have had anopportunity to meet Dr. DeSena at our last two amilycamps. He has already become a very importantmember o our community. o us, there are ewgoals more important than increasing the numberso medical proessionals and researchers who careor people with these disorders and are interested instudying these disorder to better understand them

and to ultimately nd a cure.

Please support the James . Lubin Fellowship Fund.It is a wonderul way or all o us to ensure the bestpossible medical care or ourselves and our loved oneso make an appointment with the Childrens PediatricDemyelinating Disease Clinic, contact Audrey Ayres,RN at (214) 645-7998.

dr. AllEN dESENA: FIrST JAmES T. lUBIN FElloW

DR. ALLEN DESENA


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he Paralympic Games began on August 29th 2012 inthe beautiul and multicultural city o London. Teten-day event was the perect occasion to demonstrate

to the world how capable, courageous and persevering peopleare regardless o their physical and intellectual challenges. Wewere so impressed and proud o the number o competingathletes with a rare neuroimmunologic disorder.

British competitor, Dave Bracher (44), was diagnosed withboth GuillainBarr Syndrome and Acute DisseminatedEncephalomyelitis three years ago, leaving him paraplegicaer a lengthy recovery. Last year, Dave completed his dream

o nishing a marathon in a standard wheelchair and hewas a proud torchbearer or this years Paralympics. CassieMitchell (31), a research engineer, elite athlete, and mentorwas diagnosed with Neuromyelitis Optica at the age o 18,leaving her quadriplegic and with visual impairments. In 2006,a recurrence o NMO orced Cassie to leave basketball weeksaer becoming an alternate on the USAs wheelchair basketballteam. She competed in the Paralympics or Wheelchair rackand Paracycling.

Michael Smith (20) suddenly lost his eyesight at the age o18 and was diagnosed with Optic Neuritis. He is now ullydedicated to soccer and has gained a place on Great Britainsnational team. At 14 months, Natasha Baker (22) contractedransverse Myelitis. Very early in her lie, she became ascinatedwith horses. Her physiotherapist soon noticed her passion andprovided her parents with details o the local Riding or theDisabled Association (RDA). She competed in the Paralympicsand has won two gold medals riding her horse, Cabral.

Sarah Castle (28) has been in a wheelchair since she was 11due to ransverse Myelitis. She rst started o as a swimmerand when she experienced a shoulder injury, she decided to

join the Paralympic Basketball team and won gold at Beijing.She competed in the US basketball team during this yearsParalympic Games. In 2006, Victoria Arlen ell into a vegetativestate or over two years aer being diagnosed with ransverseMyelitis. She is now ranked among the worlds top Paralympicsswimmers. Victorias excellent perormance resulted in herbreaking the International Paralympic Committee worldrecord in her event. Amanda McGrory (26) was diagnosedwith ransverse Myelitis as a child and started her Paralympic

journey in 2003, when she rst traveled to Australia as amember o the US Jr. eam. In 2008, she won her rst goldmedal in the Womens 5000m at the Paralympic Games inBeijing and competed at this years Paralympic Games. Shenished ourth in the womens marathon.

Most o the athletes who competed at these games got theirdisorder when they were children, teens, or very youngadults. For a person with a physical disability, there are manyavenues or pursuing goals and ambitions. Losing the abilityto walk or even to use ones arms doesnt oreclose all o theopportunities one has to use ones mind or heart to reach ones

goals. What is so remarkable about the athletes that compete atthis highest level is that they do so in the realm o their greatestchallenge. In the ace o their physical disability, they developtheir physical skills to the highest imaginable level. And therehave been other great athletes rom our community who havealso excelled Eve Hampton, Dana Mathewson and AnjalForber-Pratt. For these incredible athletes, they just dont excewith their bodies; they also excel with their minds. Tey areexcellent students and they are successul in their careers.

Teir athletic, academic and career achievements arerefections o great character. Tey are dedicated, disciplinedhighly motivated, creative, intelligent people. I have had aront row seat to observe all o what they have to overcome inorder to compete and to succeed in all acets o their lives. Teyexperience the same symptoms that everyone else does withthese dicult disorders. In addition to paralysis or signicantmotor weakness, they also experience atigue, depressionspasticity, and nerve pain. Tey have signicant challenges toovercome to attain their goals.

It was great to see so many individuals with the rare neuro-immunologic disorders represented at this years Paralympics

and to witness the passion with which they compete. Teyshow the world that theyre capable o reaching their dreams,no matter what obstacles they have to ace - even the Londontransport system couldnt stop them! Tey represent theircountries, and their community at these games; they alsorepresent every individual who has heard the words, you cantor you wont. Tese athletes exempliy in the most prooundway that there is lie and there are great achievements possibleaer ADEM, NMO, ON and M!

2012 loNdoN pArAlympICS


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In December 2004, my mom, Antonina Catania, wasdiagnosed with ransverse Myelitis. At the time, Iwas working at a cookie company decorating sugar

cookies. I loved my job, but in order to take care omy mom, I had to quit. My dad, sister, and I had beentaking care o my mom or the past seven and a halyears. wo years ago I started my own cookie businessrom my home. My mom was so happy or me. Everyday I would tell her about the theme o the cookiesI was making. I made cookies or wedding showers,baby showers, holidays, birthdays, and more. Variousorganizations would also ask me to donate cookies

to their cause. My mom passed away this past Juneat the age o 75, aer battling M or all those years.She was such a trooper. Every day she had a smile onher ace and she never asked, Why me? She alwaystalked about walking again: she never gave up hope!Ill remember her spirit and shell be my inspirationor the rest o my lie.

o give back to the ransverse Myelitis Association,I designed a blue angel cookie in her memory. Tecookies are the same blue color as our wristbands andare meant to increase awareness o our organizationand this horrible disease. I am asking or a $1.00donation or each cookie sale in my community, and100% o the proceeds will go to this very worthwhile

cause. I am grateul to Sandy and the sta at the MAor being there or my parents, and or all that you doKeep the hope! Ill be selling my cookies locally and atvarious vendor shows. Please visit my Facebook pageto see all o my cookies by searching Cookie Glitz orollow this web address: http://www.to.ly/LGu. Dontorget to like it!

Tank you or taking the time to read my story, anda BIG thank you to everyone who has an opportunityto support the MA through the purchase o my MBlue Angel cookies.

FIrST BErlIN myElITIS SympoSIUm

On September 24, 2011 Pro. Dr. Friedemann Paul rom the NeuroCure Clinical Research Center in Berlinopened the rst Berlin Myelitis Symposium, which included an open inormative discussion sessionbetween the researchers and the 33 individuals diagnosed with these rare neuro-immunologic disorders

and their amilies. Other distinguished speakers included Dr. Klemens Ruprecht, Department o Neurologyo Charit Medical School, and Dr. Corinna rebst rom the Medical University o Hannover who covered allo the rare neuro-immunologic disorders and MS. Te speakers pointed out the importance o co-operationbetween the individuals aected by these disorders and their doctors, and emphasized that those living with anunconrmed diagnosis reach out to specialized clinics and research centers or conrmation. It was an open andhonest conversation between the attendees where honesty was asked o the physicians by the patients and theiramilies. Te rst Berlin Myelitis Symposium was a great success. Te dialogue that was made possible through thiseducational program is critically important or both the patient community and or the clinicians and researchers.

BlUE ANgEl CooKIES: IN

mEmory oF my momRosanne (Catania) McCarthy


9/12



Colleen contracted Transverse Myelitis in 2007, whichcompletely changed her entire lie plan. Her daughter,Mandy, started a wonderul initiative to support theTMA and her mothers condition. Below you can fndthe story o how the First TM Walk was born in theirown words!

Coming up with the idea o a undraiser toraise awareness about M came aer thinkingabout what I could possibly do to help the most

important person in the world to me. Knowing theright things to say and do or someone, especially yourmother is dicult.

Te M walk brought together all o us who love mymother and have seen her struggle and overcomeobstacles over the years. Te goal was to raise money,but to also raise awareness and hope. Te mostbeautiul outcome o the event was that several peoplewith M were able to come to the walk and meetsomeone else with M or the very rst time. One o

these people told me that she no longer eels alone -Tats powerul stu.

Planning this undraiser only took a couple o monthsWe urge you to join this type o eort. Tese are somebest practices that we want to share with our ellowMA members rom our experience:

Choose a location and get permission romthe local government recreation department touse the space Set a date and make sure that no otherorganization is hosting a similar event on thesame day Obtain insurance or the walk or run, whichyou can acquire by getting in touch with yourlocal insurance agent Set up a undraising website in coordinationwith the MA Create a communications and mediaplan, which includes making inormationalpackets, sending out mass emails, setting up aFacebook event page, ordering custom t-shirtsand contacting a photographer to capture the

experience. Again, all o these eorts should becoordinated with the MA. Have a registration tent set up on the dayo the walk in order to track and obtain contactinormation or the participants. And be sure tosend thank you notes to all o the people involvedin the eort and who participated in the eort.

Te morning o the walk arrived, a damp chilly Marchmorning as we set up the church borrowed canopy,laid out our donated, We Walk or Colleen & M

t-shirts, M&Ms that said Tank You on them, blueballoons, name tags... you get the picture.

Approximately 150 brave olks turned up with theirsmiles and support or a worthy cause. Te experiencewas one that our amily and riends will never orget,and conrmed or us that a little elbow grease and a lot

WE WAlK For CollEEN FUNdrAISErMandy Edwards & Colleen Spaeth


10/12



o energy and love or a cause bigger than ourselves,and outside our comort zones, can accomplish morethan you can imagine.

What started as a seed o an idea turned out to be anamazing day, thanks to the help and participation

o many people. Te Walk that began as a little idearesulted in cash donations in excess o $11,000!

Imagine what our Association could do i each o itsmembers conducted a walk or some other orm oundraiser to support our eorts!

o view a very inspirational video o the 1st AnnualSouth Jersey ransverse Myelitis Walk, go to

http://www.vimeo.com/40105783.

In August, 27 amilies rom across the country and Canada convened at a beautiul camp in Scottsville, Kentuckyor the MA Family camp. It was a magical time or the children and all o the amilies to spend time togetherat a truly wonderul camp with incredible sta and volunteers. Te parents participated in an educationa

program with Drs. Doug Kerr, Adam Kaplin, Daniel Becker, Allen DeSena, Donna Graves, Lana Harder, KristenRahn and Janet Dean. o learn more about camp this year, please see the story and blog on our website by goingto http://www.myelitis.org/tma-blog/messy-games.

We are already looking orward to camp next summer at CCK, which will take place rom July 24th to July 28th2013. I you have a child with ADEM, NMO, ON or M and they are between the ages o 5 and 17, please applyto camp! Please email us ([email protected]) i your child does not all between these ages and you would like toapply to camp.

Please look or the application on the CCK web site http://www.thecenterorcourageouskids.org. Please applyearly as we anticipate an overwhelming response. You do not want to miss this experience!

TmA FAmIly CAmp AT THE CCK


11/12



We are looking or volunteers and interns to help support the work o the MA. I you have expertise inundraising, event planning, database management, marketing and communications, administrativemanagement, human resources management and non-prot compliance and regulations, please

contact us at [email protected].

For more details on the intern job descriptions, please visit us at http://www.myelitis.org/get-involved. Please getinvolved and support us as we advance our goals!

Lie aer diagnosis dramatically changes not onlyor those with a rare neuro-immunologic disor-der but also or their amilies in a proound way.

Parents and amilies o children living with a rare ill-ness bring remarkable passion; creativity, drive and re-silience to nding the best care or their children andbecome eective advocates not just or their childrenbut also or other amilies and orm a strong network.In August this year at Te Center or Courageous Kids,a group o parents began the process o joining theireorts and their energies to work collectively to meet

these same critical goals.

Te MA Kids Group was ormed by parents whobelieve that by working together, they can make adierence or their own child and or all o the childrenin our community who have these disorders. Tey areocusing their eorts on supporting the Jim LubinFellowship Program in order to grow the number oclinicians and researchers who are ocused on thesedisorders, to support the Family Camp program, andto help with other programs and activities that directly

impact amilies and these children.

I you have a child with ADEM, NMO, ON or Mwe urge you to get involved. I you are interested,please send an email to [email protected] and letus know that you would like to join MA Kids. Youcan nd additional inormation about MA Kids at

http://www.myelitis.org/get-involved/tma-kids .

TmA KIdS!

INTErESTEd IN volUNTEErINg or AN INTErNSHIp?


12/12

The Transverse Myelitis AssociationSanford J. Siegel1787 Sutter ParkwayPowell, Ohio 43065-8806

NONPROFIT ORG

U.S. POSTAGE PA

POWELL, OHIO

PERMIT NO. 6

ZIP CODE 43065

Family Camp: July 24-28, 2013, submit your application online as soon as possible onhttp://www.thecenterorcourageouskids.org/camperapp.html

New Website! Te MA has recently launched a new website, please visit it on http://www.myelitis.org

Membership Form: Fill out the orm on http://www.myelitis.org/join. Please help us keep your inor-mation current and help clinicians and researchers better understand these disorders.

ANNoUNCEmENTS

Sandy Siegel | President | [email protected] | (614) 766-1806Chitra Krishnan | Executive Director | [email protected]

CoNTACT US

Te ransverse Myelitis AssociationSanord Siegel, President

1787 Sutter ParkwayPowell OH 43065-8806

doNATE

Documents

TMA Newsletter Volume 10 Issue 2 – Fall 2012