Make a Muscle and Make A Difference with MDA!

Make a Muscle and Make A Difference with MDA! The Muscular Dystrophy Association is a non-profit health organization aimed at finding treatments and/or cures for over 43 different neuromusuclar diseases.

Over One Million People…. There are approximately one million people worldwide who are living with a neuromuscular disease covered by MDA. The term muscular dystrophy is an “Umbrella” term for more than 40 muscle wasting and progressive syndromes affecting both children and adults.

What is MD? Even though there are more than 40 different types of neuromuscular diseases, they all have several common threads. • They are all progressive diseases • They all involve wasting of the muscles • There are currently no cures

Who is affected? • People of all ages and race can be affected by a neuromuscular disease • Several diseases are genetic and passed down from generation to generation • Other diseases are spontaneous and there is no familial tie • None of the diseases are contagious

Is MD fatal? • Not all neuromuscular diseases are the same in progression, lifespan, etc. • Duchenne Muscular Dystrophy is the most common form of childhood muscular dystrophy and is fatal in their mid teens to early twenties. • ALS is a motor neuron disease that typically affects older adults and is fatal within 2 to 5 years of diagnosis. • There are many other forms of neuromuscular diseases however, that simply involve limited use of the patients voluntary muscles and does not impact lifespan, while others involve both voluntary and involuntary muscles and can impact their ability to perform simple every day tasks.

How Does MDA Help? • MDA provide a wide variety of services to individuals who have been diagnosed with one of the 43 neuromuscular diseases covered. • All services are provide at no cost to the individual regardless of his/her ability to pay for these services. • No one with a diagnosis is turned away for services.

MDA Covered Services • MDA Clinics at the University of Kansas Medical Center • Free Flu Shots to Individuals Registered with MDA • $500 per year towards repairs and modifications to medical equipment • Therapy consultations (i.e. respiratory therapy, physical therapy, occupational therapy, speech therapy, genetic counseling) • Support Groups (5 local support groups in Kansas City Metro) • Summer Camp for children ages 6-17 who are living with a neuromuscular disease • Information & Referral Services for special needs • My MDA… online resources • Research

Clinics… • There are three clinics held at the University of Kansas Medical Center in Kansas City, KS • Pediatric • Adult General • Multidisciplinary • MDA provides a grant in the amount of $72,000 per year to provide this clinic at no cost to our families. • There are over 1,000 individuals in the Kansas City area registered with MDA who are eligible to be seen in these clinics. • Clinic services include visit with a neurologist, social worker, MDA staff representative, occupational therapist and seating specialist. • The multidisciplinary clinic also includes a respiratory therapist, speech therapist, and dietician

Flu Shots • Flu Shots are provided at no cost at the MDA Clinic at the University of Kansas Medical Center • If a patient does not have a clinic appointment, MDA reimburses the patient for the cost of his/her flu shot up to $30..

Annual Repair Allowance • All patients registered with the association are eligible for $500 per calendar year towards the cost of repairs and/or modifications to their medical equipment. • They are able to use the vendor of their choice • Repairs can include mobility equipment, respiratory equipment, aids for daily living, etc.

Support Groups • MDA provides several support groups in the Kansas City metro area, as well as many on-line groups. • General Adult Support Group • ALS Support Group • Young Adult Support Group • Topeka Area Support Group • Columbia, MO Support Group • All groups are facilitated by a health care professional as well as an MDA staff representative and includes both social as well as educational aspects. • Goals for support groups are to connect individuals living with a neuromuscular disease with other individuals as well as outside resources which can assist them with every day life.

Online Resources • MDA provides a wide variety of online tools at www.mda.org to assist individuals, their families, and the community in regards to educational information. • My MDA allows for individuals and family members to share their story, find similar stories and fight back against their disease. • Public Health Information including informational guides for the specific disease categories, research news, and much much more • Online support groups available for individuals who cannot physically attend a local support group, but seek the guidance and comfort of a support group.

Research… • MDA provides funding for thousands of research projects worldwide for all of the diseases covered. • MDA provides updated research information to families registered with the association • All recent research information is available on our website. www.mda.org

Summer Camp… • MDA provides a week-long, overnight camping experience for children ages 6-17 who have a neuromuscular disease • Each camper has a one-on-one volunteer counselor with him/her 24 hours per day at camp • Camp activities are set up in a way that each child can participate regardless of his/her disease progression • There is an entire volunteer medical staff on duty for the week of camp to oversee all of the campers medical needs such as medications, breathing treatments, tube feedings, bowel programs, etc. • There is no cost to the families for their child to attend MDA summer camp. • Last year 78 local children and 105 volunteers attended MDA camp at Tall Oaks Conference Center in Linwood, KS • There are over 90 summer camps across the country with over 5,000 children in attendance.

How can you help? • It only takes one muscle to make a difference to families here in the Kansas City area…. Your Heart • You can help by participating in many local MDA events • MDA Muscle Walk/5K- put a team together or join an existing team or simply run in the 5K • Saturday March 2, 2013 at Arrowhead Stadium • To register go to http:www.sportkc.org

Volunteer Opportunities • Volunteer as a camp counselor June 8-15, 2013. Volunteers must be at least 16 years of age and physically able to care for a child with a neuromuscular disease. • Only 20% of camp counselors can be between the ages of 16-17 • Only 35% of camp counselors are female as 85% of our campers are male. • Volunteer to help run a group activity at MDA Summer Camp. • There are many group volunteer opportunities during the week of camp including carnivals, registration, serving meals, etc. • Assist with preparations for summer camp leading up that week (i.e. packing, stuffing yearbooks, etc.)

Volunteer Opportunities… • Volunteer at the local MDA office located at 8700 Indian Creek Parkway (Corporate Woods) Overland Park, KS 66210 • Volunteer at the Annual Muscle Walk/5K • Volunteer to be an Ambassador for MDA and visit local retail locations who participate in various fundraising programs • For volunteer opportunities contact: Kori Jungeblut at 913-451-3230

Contact Information • For information regarding MDA Summer Camp this June…. Angie Hills 913-451-3230 or ahills@mdausa.org • To register for the MDA Muscle Walk/5K go to: http:www.sportkc.org Together we can make a difference!

Make a Muscle and Make A Difference with MDA!