Servicesfor the Individual,Family and CommunityUpdated February 2011
Dear Friends,    W     hen we first learned that our daugh-   This booklet also will give you an idea of          ter Abbe...
The Muscular Dystrophy Association is Here to Help                                              M     DA is the gateway to...
Support (for more, see page 8)                Assistance with Medical Services                                            ...
MDA is Help                                                                                                MDA has organiz...
The Diagnostic Process                         likely undergo an array of testing to ensure                               ...
Serum enzyme tests                            malities in a number of proteins within    Serum enzyme tests measure the am...
Speech therapy: When prescribed by an        Local MDA offices offer regularly sched-                                     ...
help you navigate the process of obtaining     the Association annually.                                               pre...
challenges. All publications are free to        n Breathe Easy: A Respiratory Guide for                                   ...
MDA is Community                                                Summer Camp                                    MDA Chats  ...
MDA’s Purpose and Programs                                           T  he Muscular Dystrophy Association                 ...
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MDAServicesBrochure

  1. 1. Servicesfor the Individual,Family and CommunityUpdated February 2011
  2. 2. Dear Friends, W hen we first learned that our daugh- This booklet also will give you an idea of ter Abbey has a progressive muscle the many ways to get involved with MDA’s disease, we knew that one of our great- mission. Our family has found that volun- est assets for coping with the challenges teering at a fundraiser, getting a friend to ahead would be our strength as a family. participate in a special event, lending our voices to advocacy campaigns and other But little did we know that we would find activities have helped us feel like we’re an entirely new family to walk alongside doing all we can to further the search for us as we faced fears, met new challenges cures and treatments. and celebrated newfound joys. We’d like to welcome you to what we hope will As we’ve learned how Abbey’s muscle dis- become an extension of your family as ease will affect — but not limit — her life, well: the Muscular Dystrophy Association. MDA has been right there with informa- tion, medical care, unmatched support and The journey that brought you to MDA may friendship. May you find similar refuge in have been long, confusing and frustrating this community — and please don’t ever as you sought answers or a diagnosis for hesitate to turn to your new family for help yourself or a loved one. Whatever path and hope! brought you here, please know that you’re no longer alone: The entire MDA com- With love, munity — staff, physicians, researchers, sponsors, clinicians, donors, and families and individuals — is here for you. Joel and Wendi Umali Parents of Abbey Umali In this booklet you’ll find information 2011 MDA National Goodwill Ambassador about specific services that MDA offers, and how to best utilize these many resources, which can make a critical dif- ference in understanding, managing and living day-to-day with neuromuscular dis- ease. MDA provides medical care, disease- specific information, online and face-to- face support, help obtaining and repairing durable medical equipment, summer camp for youngsters and — above all — a world-class research program that some- day will put an end to muscle diseases for good.2 MDA Services • ©2011 MDA
  3. 3. The Muscular Dystrophy Association is Here to Help M DA is the gateway to information, n Connecting with others in your area resources and specialized health with a similar diagnosis care for individuals and families coping n Informational brochures and with muscle disease. At more than 200 publications local offices around the country, MDA’s n Support groups (in person, on the compassionate and knowledgeable staff phone and online) provides support and guidance. n Support and resources for caregivers n Free flu shots MDA’s comprehensive website (www. n Presentations to your child’s school mda.org) is another valuable source of“We probably would not have survived information about neuromuscular disease, n Referrals to community-basedthe last four years without the help of research news and MDA programs. resourcesthe Muscular Dystrophy Association. n AdvocacyWhen we were introduced to them,our lives changed. We were able to This booklet provides basic information n How you can join the fight againstnetwork as parents and meet other about MDA services and programs. For neuromuscular diseaseparents going through similar experi- information specific to you, contact yourences. The staff at our local MDA n … and more.office has been wonderful. They’ve local MDA office.just accepted us as part MDA is here to help. If your local MDAof their family. ” Turn to MDA with questions about: office can’t address a specific need, they’ll n Specialized health care and referrals help you find other resources. Don’t hesi-Robin Pennell, VirginiaParent of a child affected by n Research advances in your disease tate to contact MDA for assistance andlimb-girdle muscular dystrophy n Durable medical equipment needs answers. n Explaining your disease to family mem- bers and others MDA is Hope concerned individuals and cooperating What is MDA? organizations. These programs include: In 1950, a group of adults with neu- romuscular diseases and parents of Research children with these disorders joined MDA is among the foremost funders in forces to form the Muscular Dystrophy the world of research into neuromuscular Association. Recognized by the American diseases. MDA-funded scientists are at Medical Association “for significant and the cutting edge of research into cell- lasting contributions to the health and based therapies and testing of potential welfare of humanity,” MDA raises funds treatments for the more than 40 diseases to defeat more than 40 forms of neuro- under its umbrella. For the most current muscular disease through programs of research news, go to mda.org/diseases worldwide research, medical and support and click on a disease name. services, professional and public health Clinics (for more, see page 5) education, and advocacy. The Association At facilities in MDA’s nationwide network provides services in the United States of clinics, individuals receive diagnostic and Puerto Rico through more than 200 and follow-up care from expert teams of local offices. muscle-disease specialists. MDA’s programs are funded almost entirely by the voluntary contributions of 3 MDA Services • ©2011 MDA
  4. 4. Support (for more, see page 8) Assistance with Medical Services You are not alone. MDA is here every MDA will assist with payment for select step of the way, providing resources and services through MDA clinics or local guidance, assistance locating and repair- medical equipment providers. To maxi- ing needed equipment, support groups, mize MDA resources, payment is made summer camps for youngsters, online after private and public insurance and/or “e-communities” and much more. other resources have paid. Please be sure to contact the MDA office in your area Information (for more, see page 9) before ordering services, if MDA payment Knowledge is power. MDA conducts edu- is desired. cational programs for individuals with neuromuscular diseases, the general public and medical professionals, includ- ing publishing a wide variety of print and audiovisual materials, and maintaining three websites. MDA sponsors scientific symposia and other professional meetings to increase knowledge of neuromuscular disease among medical professionals. Advocacy (for more, see page 10) MDA’s advocacy efforts are commit- ted to making life better for people with neuromuscular diseases by providing“When our son was first diagnosed, wedidn’t know anything about muscular representation in matters of public policydystrophy other than we had watched and research advancement, nationally andthe Telethon since we were little kids. internationally; and by facilitating activeWithin 24 hours, we had contacted theMuscular Dystrophy Association and involvement in these areas by the peoplethat was a fantastic move to make. it serves.We learned throughout that there washope.” Accessing MDA ServicesDoriann Myers, NevadaParent of a child affected by Initial DiagnosisDuchenne muscular dystrophy The first step to access MDA services is attending an MDA clinic to confirm your diagnosis of one of the neuromuscular diseases covered by MDA (see page 12 for a complete list). If the disease diagnosed is not covered by MDA, referrals will be made to an appro- priate health or community agency. 4 MDA Services • ©2011 MDA
  5. 5. MDA is Help MDA has organized 10 of its elite clinics The MDA Team into networks to support and speed clini- MDA District offices are your headquarters cal trials of promising research. Clinics for access to specialized health care at in the Duchenne Muscular Dystrophy MDA clinics, as well as for local support Clinical Research Network are Washington groups, summer camp, resource referral University in St. Louis; Boston Children’s and more. Staff at your local MDA office Hospital; Nationwide Children’s Hospital in can provide information, support and Columbus, Ohio; University of California guidance. Davis in Sacramento, Calif.; and University of Minnesota in Minneapolis. In fact, MDA should be your first phone call when you have nonmedical questions Clinics in the ALS Clinical Research about living with a neuromuscular disease. Network are California Pacific Medical Medical questions should be directed to Center in San Francisco; Columbia the MDA clinic team, and MDA staff can University in New York; Emory University provide that contact information if needed. in Atlanta; Massachusetts General in Boston; and Methodist Hospital in In most areas, your primary contact at Houston. MDA will be the health care service coor- dinator (HCSC), who can connect you with all appropriate MDA services and provide The Clinic Team information about federal, state and local MDA clinics utilize a multidisciplinary team resources that may prove helpful. approach, meaning individuals can see knowledgeable health care specialists from The MDA Clinic a variety of disciplines, all at one location.“The MDA clinics have been a very MDA maintains a network of some 200 Specialists can include:positive part of our lives, and they’ve specialized clinics across the United States n neurologistsreally, truly become a part of our fam-ily. I really can’t imagine what it would and in Puerto Rico. Most MDA clinics are n cardiologistsbe like for our son and for us if there located in teaching hospitals, and many n physiatristsweren’t an MDA clinic.” MDA clinic directors are university medi- n orthopedistsSean Masters, Arizona cal school professors as well as practicing n psychologistsParent of a child affected by physicians. MDA clinics are at the fore-spinal muscular atrophy n pulmonologists front of research and treatment methods; n social workers some clinics also serve as sites for clinical trials of the latest experimental therapies. n physical and occupational therapists n nurse case managers Local MDA staff can direct you to the n speech/language pathologists closest MDA clinic, or you can find a local n dieticians MDA clinic online at www.mda.org/locate, n genetic counselors or by calling (800) 572-1717. The MDA health care service coordinator MDA has more than 35 MDA/ALS centers (HCSC) is a central figure at clinic visits. across the country. MDA distinguishes He or she is usually present on clinic days some clinics as MDA/ALS centers because to answer questions, distribute MDA edu- of the medical team’s particular expertise cational materials, coordinate any MDA with the disease and the research taking services you may require and assist with place there. community resource referrals. 5 MDA Services Brochure • ©2011 MDA
  6. 6. The Diagnostic Process likely undergo an array of testing to ensure that as much information as possible is The first step in medical care is determin- obtained and other diseases are ruled out. ing the nature of the disease. The MDA Many treatment options are dependent on clinic team can perform diagnostic exami- obtaining a specific diagnosis. nations and recommend pertinent labora- tory tests. Among the various types of diagnostic tools your medical team may use are: Some of these tests may be extensive, yet in most instances they can be done on an Clinical examination outpatient basis. Information about genet- The clinical examination of someone ic-based diagnostic testing is available at suspected of having a neuromuscular dis- the MDA clinic. ease focuses on muscle appearance and strength. Muscles are examined with spe- Following clinical examination and analysis cial attention given to those of the arms, of the laboratory tests, many neuromuscu- legs, shoulders and hips. A few neuro- lar diseases can be quickly and accurately muscular diseases affect facial muscles, identified. Some neuromuscular diseases, and these too are examined. however, can be more difficult to diag- nose. In these cases, the physician will Determining which muscles are not weak make what is called a “differential diag- is as important as determining which nosis,” listing two or more diseases that muscles are weak. Each neuromuscular have similar symptoms. disease typically shows a specific pattern of muscle involvement. A final diagnosis A definitive diagnosis may require waiting is based in large part on the pattern of until the disease has progressed to a stage muscle involvement detected during the that is unique to that disease. clinical examination. With the majority of neuromuscular dis- Family history eases, the first noticeable symptom is Many neuromuscular diseases are genetic usually a persistent weakness in one or in origin. Knowledge of other affected more muscles. family members can help to establish and/“When I was diagnosed with muscular Muscles can become weak for many or confirm a diagnosis. However, it’s pos-dystrophy, we didn’t know where to sible to have a genetic disease even with-turn. But the Muscular Dystrophy reasons. The first question the physician will seek to answer in trying to establish out a family history of that disease.Association was really there forme and my family. They walked us a diagnosis is whether muscle functionthrough what the disease was, what Nerve conduction studies is abnormal because there is a disease ofwe could expect, how we should work and electromyogramtogether as a team to tackle this illness muscle itself, or whether muscle function These two tests often are performed atand make sure that it didn’t impair me is abnormal because of a disorder that hasfrom achieving my dreams.” the same evaluation. The nerve conduc- developed in other tissue (e.g., nerve). tion studies measure the ability of nervesVance Taylor, Maryland The following three pages describe theLimb-girdle muscular dystrophy to conduct impulses to muscle; this is most common diagnostic and laboratory an important test when evaluating for procedures used to determine why muscle disorders such as Charcot-Marie-Tooth function is abnormal and arrive at a defini- disease. An electromyogram (EMG) mea- tive diagnosis. sures electrical activity of muscle. Muscle Diagnostic Procedures of someone with a neuromuscular disease Neuromuscular diseases can present in a may have an electrical activity charac- variety of ways and at different ages. Prior teristically different from that of normal to receiving a confirmed diagnosis, you’ll muscle. 6 MDA Services Brochure • ©2011 MDA
  7. 7. Serum enzyme tests malities in a number of proteins within Serum enzyme tests measure the amount muscle cells. of muscle proteins present in the blood. When muscle tissue is healthy, these Managing Neuromuscular enzymes, particularly creatine kinase (CK), Disease remain in muscle and the amount present in blood is relatively low. Upon diagnosis, a number of services may be recommended by the MDA clinic team Many, but not all, neuromuscular diseases as measures to medically manage neuro- that cause muscle destruction lead to a muscular disorders. significant increase in the muscle CK and other enzyme levels found in the blood. Periodic re-evaluations Thus, serum enzyme tests can be impor- Follow-up visits are provided at MDA clin- tant aids in the diagnosis of neuromuscu- ics. Ongoing medical management can lar diseases. include therapies and measures for con- trolling symptoms, and medical interven- The value of these tests is often great- tions to assist individuals in maintaining est at the early stages of the disease. At the highest possible quality of life. the earliest disease stage, muscle mass is relatively great and changes in serum Therapy enzyme levels may occur even before An MDA clinic physician may recommend symptoms such as weakness become that you consult with a physical, occupa- apparent. In some neuromuscular dis- tional, respiratory and/or speech therapist eases, muscle enzyme levels fluctuate with to assist you in managing symptoms of disease activity. your neuromuscular disease and to main- tain independence. At later disease stages, however, muscle mass may be so reduced that serum Physical therapy: MDA will assist with enzyme levels may even appear normal. payment for one consultation annually to (a) evaluate the need for physical therapy Genetic tests and (b) instruct family members and A small amount of blood can be used others on how to administer prescribed to extract DNA from blood cells. This is exercises. Physical therapy can keep still- extremely valuable for diagnosing genetic healthy muscles functioning, help you mutations which can cause specific neuro- maintain idependence and prevent the muscular diseases. onset of painful muscle contractures. Muscle biopsy Occupational therapy: MDA will assist In this procedure, muscle tissue is surgi- with payment for one consultation annu- cally removed for microscopic and/or bio- ally as prescribed. Occupational therapy chemical analysis. For some neuromus- enables people to make maximum use of cular diseases, a final diagnosis depends their physical capabilities through the use on the analysis of a muscle biopsy. The of strategies and techniques, specially amount of muscle removed is roughly designed implements and daily living aids equivalent in size to the tip of a little in the home and work environments. finger. In some conditions, such as the inflammatory myopathies and central core Respiratory therapy: MDA will assist with disease, the muscle tissue has a charac- payment for one consultation annually for teristic appearance under the microscope. instruction in the use of prescribed respi- Muscle tissue can be analyzed for abnor- ratory therapy equipment designed to aug- ment or increase vital lung capacity.7 MDA Services Brochure • ©2011 MDA
  8. 8. Speech therapy: When prescribed by an Local MDA offices offer regularly sched- MDA clinic physician, MDA will assist with uled support group sessions that provide payment for one consultation annually a chance to meet and share with others to evaluate the muscles responsible for facing similar challenges. speech and swallowing. Through such an evaluation, a speech-language pathologist Support services also are provided can determine if exercise, use of an aug- online (www.mda.org) through the mentative communication device and/or lively e-community myMDA and through modifications to meals are appropriate. myMuscleTeam, which enables families to keep friends and loved ones updated and Social services assists in coordinating caregiving tasks. Social services are a vital aspect of (For more on these programs, see page the MDA clinic program. MDA local 11.) offices and clinics may provide additional resources for families seeking to identify Equipment Assistance alternate sources of payment for medical Equipment Program services and equipment needs. MDA assists individuals with obtaining Social workers also may assist with con- medical equipment through its national necting you to other community resources equipment loan program and referrals to and providing emotional support for you community resources. and your family. MDA’s national equipment program is Genetic counseling available to anyone affected by the dis- Genetic counselors can assist families by: eases in MDA’s program for whom medi- n obtaining and interpreting a genetic cal equipment has been recommended (DNA) or other appropriate test; through the MDA clinic. n obtaining a diagnosis for a genetic To the extent feasible and when available, condition; MDA provides good-condition refurbished“There’s a multitude of support groups n determining whether parents of anthat the MDA provides. We’re able to wheelchairs and other durable medicalsit down in a private setting and share affected child are carriers of the equipment medically prescribed due to anour experiences with other families. By disorder; individual’s neuromuscular disease. Thisdoing so we realize that we’re not alone n assessing the risk of passing on the includes wheelchairs, hospital beds, walk-and we actually realize that if we canstart sharing information with others disease to future children; and ers and canes, communication devicesand helping others, that we can n determining whether other family and similar items.also help ourselves.” members may be at risk.Jeff Vittek, California Through its local field offices, MDA grate-Parent of a child affected by Flu inoculations fully accepts donations of medical equip-myotonic muscular dystrophy Influenza is particularly hazardous to ment for distribution through its equip- people whose respiratory muscles have ment program. MDA is able to make minor been weakened by neuromuscular disease. repairs to gently used equipment donated Therefore, MDA assists with flu inocula- to the Association for this purpose. tions when medically prescribed. Many federal, state and local resources exist to assist individuals with equipment MDA Support Services purchases. Local MDA offices maintain an Support services help those with neu- extensive database of resources available romuscular diseases, their families and in your area. You can contact your local caregivers address the challenges that MDA office at (800) 572-1717 to be con- accompany these conditions. nected with knowledgeable staff who will 8 MDA Services • ©2011 MDA
  9. 9. help you navigate the process of obtaining the Association annually. prescribed equipment. Community resources Equipment Repairs Services not provided by MDA are often MDA provides help with the cost of repairs available from other organized community to all types of medical equipment required agencies. MDA assists in securing help due to an individual’s neuromuscular from these community resources. disease. To request such assistance, it’s important to contact your local MDA office before repairs are completed. The amount allowable toward repairs is established by MDA is Information M DA is an excellent source of current, n Contact information for all MDA clinics accurate and practical information and local offices about all the neuromuscular diseases in its n Tools to help you get involved in the program, and about daily life with muscle fight against neuromuscular disease weakness. Information is available in print, video and online. MDA/ALS Newsmagazine (alsn.mda.org) MDA Website Published bimonthly, this award-winning (www.mda.org) publication is free to people affected by This site contains thousands of pages of ALS. In addition to research news and in-depth information, including: analysis, it includes practical information n Information about each disease in for individuals and families living with the MDA’s program, explaining the under- disorder. lying biology, symptoms, interventions, inheritance patterns, current research Quest Magazine and other relevant information (quest.mda.org) n News updates on research advances and health care issues This award-winning quarterly publication is free to those MDA serves. Each issue n Searchable current and back issues of“One of the things that we’re really contains articles about research, health MDA’s magazines (Quest and the MDA/keeping up on is the status of research. and living with muscle disease, includingThat’s a big deal for us and there’s ALS Newsmagazine) parenting, caregiving, independent living,always updates on research that come n Printable versions of all MDA publica-through either Quest magazine helpful products and strategies, legislation tionsor the MDA website.” and profiles of interesting people. n State-specific resource guide and linksBill Stehling, Arizona to nationwide resourcesParent of a child affected by n Advocacy information about pending Other MDA PublicationsDuchenne muscular dystrophy legislation relevant to the MDA com- MDA’s comprehensive “Facts About” munity series provides a concise, informative n Information about clinical trials and overview of each of the more than 40 dis- MDA research grants eases in its program. Other publications n Information about MDA services, pro- include detailed guide books for caregiv- grams, resources and spokespeople ers, parents and teachers, and booklets about coping with medical and daily living 9 MDA Services • ©2011 MDA
  10. 10. challenges. All publications are free to n Breathe Easy: A Respiratory Guide for those served by MDA and can be down- People Living with Neuromuscular loaded online or obtained through your Diseases (video) local MDA office. n Breath of Life (video for medical pro- fessionals) Videos MDA offers several professionally pro- duced videos covering medical issues of interest to people with muscle diseases. These include: n With Hope and Courage: Your Guide to Living with ALS (DVD) MDA is Empowerment MDA’s National Task Force on Public Advocacy Awareness is a group of volunteers who An important way to get involved with advise the Association on issues of inter- the MDA community is through the est and importance to people with dis- Association’s advocacy program. Based abilities. The Task Force consists of adults in Washington D.C., the advocacy team who are leaders in their communities and monitors and supports programs, leg- who are affected by one of the neuromus- islation and health care policies relevant cular diseases in MDA’s program. to people with neuromuscular diseases, such as medical care, insurance, acces- Since MDA began, adults with neuro- sibility, transportation, independent living, muscular diseases have been among its personal assistance services and research leaders as members of the board of direc- funding. tors and advisers. Under their guidance, MDA has educated the public about living Sign up to be an MDA Advocate on the with disabilities, and supported efforts to“My ultimate happiness was found in MDA website (www.mda.org/advocacy) provide people with disabilities with equalthe world of advocacy. I encourage and receive e-updates and up-to-the-min- rights and opportunities.anyone who is thinking about taking on ute news on policy issues impacting thea leadership role in advocacy. It is very National legislation to which MDA lentrewarding. Receiving help is an art ... MDA community.Through advocacy I can give back.” leadership and support include: MDA’s “Take 5” advocacy initiativeAngela Wrigglesworth, Texas n Muscular Dystrophy Community, encourages everyone to “take five min-spinal muscular atrophy utes” to contact their elected officials Research and Education (MD-CARE) using online tools that provide talking Amendments Act (passed into law); points about important legislation and n Spinal Muscular Atrophy Treatment contact information for elected officials. Acceleration Act; n Genetic Information Nondiscrimination MDA’s summer advocacy outreach pro- Act (passed into law); gram — the MDA Fly Out — provides the n Medicare Improvements to Patients MDA community with opportunities to and Providers Act (passed into law); meet with elected officials face to face to n Access to Complex Rehabilitation and discuss matters of personal importance. Assistive Technology Act; and n ALS Registry Act (passed into law). 10 MDA Services • ©2011 MDA
  11. 11. MDA is Community Summer Camp MDA Chats MDA camp is a magical place offering a MDA hosts a variety of regularly sched- wide range of activities specially designed uled online chat sessions at www.mda. for youngsters ages 6 to 17 who have a org/chat. The chats, which can be disease- neuromuscular disease. Camp offers an specific, role-specific (such as for parents unmatched opportunity to develop lifelong or caregivers) or theme-related (such friendships, share interests and build self- as “positive thinking”), enable real-time confidence. Activities are geared to the interaction from the comfort of your home abilities of the campers and range from with other adults who are living with neu- outdoor sports such as swimming, boat- romuscular diseases.“MDA camp is basically one of themost amazing places a child with mus- ing, baseball and horseback riding, to lesscular dystrophy can go. You can do physically demanding programs like arts Volunteeranything from sports to crafts. We have and crafts, and talent shows. Volunteera carnival, a dance. We ride horses. We Volunteers are needed for activities andhave a petting zoo. We have a talent counselors work one on one with camp- events that raise awareness about neu-show. I mean, it’s just amazing.” ers around the clock, providing the care, romuscular diseases and raise funds forCaroline, MDA camper close supervision and attention the camp- MDA’s research and services programs. ers need. Thousands of youngsters attend Many MDA volunteers find that being part MDA camp each year at no cost to their of a larger effort to defeat neuromuscular families. diseases fortifies and renews their spirits. Every local MDA office has a full calendar myMDA (mda.org/myMDA) of events that depends on volunteers, and MDA’s online community enables those there also are opportunities for volunteers affected by neuromuscular diseases to to help with administrative tasks — just come together and share their experiences ask! with people who truly understand, while MDA volunteer opportunities include: also learning from the experiences of oth- n Golf tournaments ers. Members (who must be age 18 or older) can post photos, videos and blogs, n MDA Muscle Walk and participate in lively message boards n Hop-A-Thon® (disability awareness/ and disease-specific groups. fundraising program for young chil-“Through MDA we’ve met so manypeople who have been a great support. dren)The people who work for MDA havereally truly become our friends and part myMuscleTeam n MDA Lock-Up (local business and community leaders are “arrested” andof our support network.” (mda.org/mymuscleteam) must raise their “bail”)Scott and Kirsten Stafne, Minnesota MDA’s myMuscleTeam is a simple, free,amyotrophic lateral sclerosis n Youth Events (school clubs and organi- powerful tool that helps MDA families zations combine fun with fundraising) maximize their most important resource — n MDA Labor Day Telethon local broad- their “Muscle Team” of family and friends. casts Users create private, secure myMuscle- Team Web pages that enable them to To learn more, contact your local office or post journal entries to keep friends and visit the “How to Help” section of www. loved ones updated; and utilize a “care mda.org. coordination calendar” where they can post requests for assistance and schedule volunteer help. 11 MDA Services • ©2011 MDA
  12. 12. MDA’s Purpose and Programs T he Muscular Dystrophy Association fights neuromuscular diseases through an unparalleled worldwide research effort. Metabolic Diseases of Muscle Phosphorylase deficiency (McArdle disease) Acid maltase deficiency (Pompe disease) The following diseases are included in Phosphofructokinase deficiency MDA’s program: (Tarui disease) Debrancher enzyme deficiency Muscular Dystrophies (Cori or Forbes disease) Myotonic dystrophy (Steinert disease) Mitochondrial myopathy Duchenne muscular dystrophy Carnitine deficiency Becker muscular dystrophy Carnitine palmityl transferase deficiency Limb-girdle muscular dystrophy Phosphoglycerate kinase deficiency Facioscapulohumeral muscular dystrophy Phosphoglycerate mutase deficiency Congenital muscular dystrophy Lactate dehydrogenase deficiency Oculopharyngeal muscular dystrophy Myoadenylate deaminase deficiency Distal muscular dystrophy Emery-Dreifuss muscular dystrophy Myopathies Due to Endocrine Abnormalities Motor Neuron Diseases Hyperthyroid myopathy Amyotrophic lateral sclerosis (ALS) Hypothyroid myopathy Infantile progressive spinal muscular atrophy Other Myopathies (Type 1, Werdnig-Hoffmann disease) Myotonia congenita Intermediate spinal muscular atrophy Paramyotonia congenita (Type 2) Central core disease Juvenile spinal muscular atrophy Nemaline myopathy (Type 3, Kugelberg-Welander disease) Myotubular myopathy Adult spinal muscular atrophy (Type 4) Periodic paralysis Spinal-bulbar muscular atrophy (Kennedy disease) Inflammatory Myopathies Polymyositis Dermatomyositis Inclusion-body myositis Diseases of Neuromuscular Junction Myasthenia gravisMDA’s website is constantly Lambert-Eaton (myasthenic) syndromeupdated with the latest information Congenital myasthenic syndromesabout the diseases in its program.Go to www.mda.org. Diseases of Peripheral Nerve Charcot-Marie-Tooth diseaseJerry Lewis, National Chairman Friedreich’s ataxiawww.mda.org • (800) 572-1717 Dejerine-Sottas disease©2011, Muscular DystrophyAssociation Inc. 12 MDA Services • ©2011 MDA

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