Access MDA Summer 2014

News and updates from the MDA community

by Quest Staff on July 7, 2014 - 9:11am

Quest Summer 2014

A Lasting Legacy: A family honors lost loved ones with a planned gift to MDA

Roseann and David Van Duren lost their 25-year-old son, Joey, to DMD.

From a young age, Roseann Van Duren  witnessed the effects of muscle disease in  her brother, Michael, who ultimately passed away due to his Duchenne muscular dystrophy (DMD). But years later that awareness did little to ease the pain of Roseann and her husband, David, when their son, Joey, who also had been diagnosed with DMD, shared the same fate as his uncle, losing his battle to the disease at the young age of 25.

Amid the pain of losing loved ones to muscle disease, the Van Durens found solace in the work and the lifesaving mission of MDA, in which they saw an organization that was committed to helping others avoid the same heartbreak. And to match that commitment, the Van Durens have formally planned a gift — an end-of-life donation — for MDA in their will.

“We know that [MDA is] trying to find a cure,” says Roseann Van Duren. “We want to support whatever they can do that would help other families to not have to go through this. We just want to prevent any more of this from happening.”

If you’re interested in following in the Van Duren’s footsteps and planning for MDA in your will, the process is not difficult, and MDA’s Legacy Gifts Department has staff and resources to help you make a decision. To get started, visit mdausa.planyourlegacy.org.

Why Plan for MDA in Your Will?

According to Jade Bristol-Verity, Esq., MDA’s national director of Legacy Gifts, there are almost as many reasons people decide to make a planned gift to MDA as there are dedicated members of the MDA family. A few common reasons are to:

Leave a legacy: “With a gift to MDA, you are leaving something behind that speaks to the values that you had in your life,” says Bristol-Verity. “You’ll be leaving something that will continue into the future and do good for others.”

Stay in control: MDA accepts restricted gifts, so you can restrict your donation to specific programs like transitions or summer camp, or to a specific disease like DMD or SMA.

Finalize one’s will: If you haven’t made a will, needing to allocate a planned gift could be a good reason to think about it. “By not planning, you’re not opting out of anything,” says Bristol-Verity, “and you’re choosing a plan governed by statute rather than your own plan.”

Think long term — and short: If you are hesitant to donate during your lifetime, despite a commitment to MDA, because you might need extra money for personal medical reasons, a planned gift ensures you have the money today while still supporting MDA in the end.

Benefit one’s estate: Depending on the state you reside in, giving a gift to MDA could reduce the state taxes your estate would pay.

 

MDA continues to foster its partnership with Major League Baseball, and 2014 marks the 75th anniversary of Lou Gehrig’s famous “farewell to baseball” address on July 4, 1939.

Getting the Ball Rolling: MDA partners with MLB this summer for an important anniversary

To commemorate the 75th anniversary of Lou Gehrig’s unforgettable farewell to baseball address, Major League Baseball (MLB) is partnering this summer with MDA and other leading organizations that fight amyotrophic lateral sclerosis (ALS) to bring awareness to their shared cause. Gehrig, who was forced to retire from his career as a ballplayer after being diagnosed with ALS, gave an emotional speech to the crowd at Yankee Stadium on July 4, 1939, famously calling himself “the luckiest man on the face of the earth,” despite his diagnosis.

As part of the 4♦ALS campaign this July 4th weekend, events will be held at ballparks across the country to remember Gehrig and his speech and bring attention to ALS. Players, coaches and umpires will wear patches that celebrate the anniversary. Home teams will honor local ALS families and also host readings of Gehrig’s famous speech. In addition, the History Channel has prepared a PSA featuring players reciting the speech that will be played in parks and on the MLB Network.

As the leading organization worldwide in the fight against ALS, MDA will be working with MLB throughout the summer to identify opportunities to raise funds and spread awareness.

Visit MDA's website for more information. And to support MDA’s progress in the fight against ALS, go to mda.org/MLB4ALS.

 

Party Time: Show of Strength premiere parties celebrate the dynamic MDA community

 
In 2013, about 150 people attended a preview party in south Texas.

The MDA Show of Strength Telethon is one of MDA’s flagship events. It’s a great opportunity for MDA’s community of families, sponsors, volunteers and clinic and research teams to come together and show support for MDA’s mission to save and improve lives. One way it does this is through local Show of Strength premiere parties, which are hosted by MDA offices nationwide in advance of the show itself.

Annie Clary, MDA’s divisional director for southern Texas cities including Houston, San Antonio and Corpus Christi, helped put together the first-ever premiere party for that region last year. About 150 MDA staff, families, longtime volunteers and sponsors came together to eat, drink and celebrate MDA’s progress.

The party was a show all on its own, with an emcee from a local ABC affiliate and MDA families making presentations in between sneak peek clips from the show. MDA sponsors were awarded with plaques, in addition to thanks from the families in attendance.

“It is truly a family reunion,” says Clary. “It’s about the celebration of how far we’ve come in the year. The Show of Strength telethon has been such a good tradition and an opportunity to bring all these varieties of people together.”

If you’re interested in attending a Show of Strength premiere party this year, contact your local MDA office to find out where one is happening near you. Go to the MDA locator box and type in your ZIP code, or call (800) 572-1717. If you’d like to help support MDA’s mission to save and improve lives, please give what you can at mda.org/donate.

 

Coming Together: National Becker Muscular Dystrophy Conference to create community

Each year, people travel from all over the country to attend the National Becker Muscular Dystrophy Conference, gathering information from expert speakers who discuss a wide range of topics relating to the disease.

On Aug. 2, 2014, the sixth annual National Becker Muscular Dystrophy Conference will take place in Dallas, Texas. Dr. Susan Iannaccone, director of the MDA Clinic at Children’s Medical Center of Dallas, is serving as conference chair. The event features speakers from across the country who will discuss a wide range of topics relating to Becker muscular dystrophy (BMD) — research and clinical trial updates, medical management, daily living issues and more.

While providing information about BMD and a venue for those affected by the disease to engage in discussion are key goals of the conference, attendees’ longest-lasting takeaway often is the community they form.

“Every single year we have somebody who attends the conference and says, ‘I’ve never met another person with BMD,’” says Carolyn Minnerly, MDA’s national director of summer camp and support services. “Many great connections are made the day of the event that you just don’t get anywhere else. We have a group of men who have gone to the conference every year, and they’ve built these lifelong friendships from meeting at the conference.”

Unable to attend this year? Stay in the loop by watching an archived video that will be available on MDA website following the event.  

 

 

Shop and Stop Muscle Disease: Aisles of Smiles supports MDA through local grocery stores

MDA’s Aisles of Smiles program started in 1985 when Hank Lautrup, a food broker with Acosta and father to a son with muscular dystrophy, recognized the fundraising power of teaming up with the retail grocery industry to support MDA’s cause. In the 29 years since, and with the help of a national partnership with Acosta Sales and Marketing, Aisles of Smiles has exploded in popularity, raising more than $81 million for MDA.

Through the program, retailers promote specific products in their stores during a week in August, and a portion of the proceeds from those sales and/or participation fees go to MDA. 

“This has really provided an opportunity for MDA to connect with consumers and help us encourage them to support MDA,” says Todd Hermon, MDA’s national vice president of retail partnerships. “We know through research that consumers care about causes, and [Aisles of Smiles] has really resonated with customers, retailers and brands alike.” 

Participating retailers this year include Albertsons, Jewel-Osco, Price Chopper, Shaw’s, Hy-Vee, Fairway, Piggly Wiggly, Unified Grocers, United Supermarkets and many more.


Back to School: MDA’s educational resources help schools understand your child’s needs 

Fall is right around the corner, so as your child prepares for a new school year, be sure to take a look at the educational resources available on the MDA website. Included among the resources are helpful tips for communicating with teachers and school administrators, information about how to schedule a presentation that your local MDA staff can give to teachers or students, webinars, information from MDA publications and school accommodation recommendations for specific neuromuscular diseases. These recommendations are printable PDF fact sheets that you can provide to teachers and school staff. 

Also, if you or your teenager is preparing for college, MDA’s Transitions Center offers a wealth of information, resources and personal stories from teens and young adults living with muscle disease who have made the journey from high school to college and beyond. 

 

Making Bail

This summer, and all throughout the year, many MDA community members across the country will participate in the MDA Lock-Up, a fundraising program where local business and community leaders are “locked up” as jailbirds, only to be released when they can make bail through donations. Lock-Ups help show local communities how much MDA appreciates their help in the fight against muscle disease. 

If you’re interested in getting involved or finding out how you can help, call your local MDA office at (800) 572-1717.

 

ADA Roundup: A look at what developments nationwide mean for people with disabilities

MDA Transitions blogger Carden Wyckoff is leading an accessibility campaign at the University of Georgia.

With the 24th anniversary of the Americans with Disabilities Act upon us, here’s a collection of what’s happening in cities across the country.

  • A Courtyard by Marriott hotel in Muncie, Ind., is set to be the first of its kind where 20 percent of its employees will be people with developmental and physical disabilities. The new property is set to open in the summer of 2015.
  • In Athens, Georgia, MDA Transitions blogger Carden Wyckoff and two classmates, Khaled Alsafadi and Marquise Lane, are leading a campaign to make the University of Georgia’s Arch accessible for all students at all times. Every year in May, graduates take their first walk through the Arch, symbolizing their transition from the university to the community. The “Make UGA’s Arch Accessible” Facebook page has garnered more than 2,300 likes; the online petition on change.org has more than 1,200 signatures, with another 4,000 paper signatures. The goal is to have a permanent ramp built through the Arch. To learn more, visit facebook.com/ugaarch.
  • In April, New York City’s Taxi and Limousine Commission voted to add a 30-cent surcharge to all cab rides in order to boost the number of wheelchair-accessible vehicles. Riders will start paying the fee in 2015, which will go toward converting more than half of the city’s current fleet of taxis into accessible vehicles. Visit the “Taxis for All” page on Facebook.
  • In May, voters with disabilities in New York City won a major civil rights victory, as a unanimous panel of the United States Court of Appeals for the Second Circuit found that the Board of Elections in New York City discriminated against voters with disabilities by failing to make its poll sites accessible on Election Day. To read the court’s full decision, go to dralegal.org.
  • In an effort to reduce high unemployment rates among people with disabilities, a new Labor Department rule requires federal contractors to set a goal of having a workforce that includes 7 percent workers with disabilities. Companies that can’t prove they attempted to meet the goal could face penalties or loss of government contracts. To learn more, go to dol.gov.
  • Beginning April 27, the U.S. Department of Justice said it will increase the maximum civil penalty to $75,000 for violations of ADA provisions requiring restaurants, movie theaters, schools and other businesses open to the public to be accessible and accommodate people with disabilities. Previously, the maximum was $55,000. To learn more, visit ada.gov/civil_penalties_2014.htm.
  • Earlier this year, nine of Broadway’s most famous theaters agreed as part of a settlement with the federal government to make extensive changes in order to enhance accessibility for patrons with disabilities. The theaters will eliminate more than 500 accessibility barriers, provide 70 wheelchair-accessible seating locations and offer 134 aisle seats for individuals who can transfer to a traditional seat.  

The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, state and local government services, public accommodations, commercial facilities and transportation. To learn more about the ADA, its enforcement activities and latest developments in ADA-related news, visit the ADA website.

 

Printing Progress: An exoskeleton made by a 3-D printer helps Hannah Mohn stay mobile

The WREX allows Hannah Mohn to play more independently.
Hannah's use of the WREX has built up muscles in her arms and improved her balance.

Since she was 18 months old, Hannah Mohn, who has frozen joints as a result of congenital muscular dystrophy (CMD), has been using Wilmington Robotic EXoskeleton (WREX) arms to help her move around and play. What makes these arms unique is that their components are made by a 3-D printer, a machine that creates plastic or metal objects based on computer plans by slowly layering the materials in a pattern. This allows the technicians who make the arms to do so quickly and with a high level of customization. The device is part of a research project at Nemours/Alfred I. duPont Hospital for Children in Delaware, which is an MDA clinic location.

Now 4 years old, Hannah is more mobile and her range of motion is better than ever, thanks in large part to her WREX arms. 

“Literally as soon as they put it on, she was able to reach her mouth and her forehead and be able to lift a cup up a little easier,” says Jennifer Mohn, Hannah’s mom. “And now with therapy and the continued use of them, she’s able to actually sustain holding her arms out, which is something that she’s never been able to do without them.”

Hannah spends some time with the braces on every day, and they are even easy enough to put on that she can use them at school for activities like painting. This constant use lets her build up muscles that make movement easier even when she isn’t wearing the arms. Daily activities like eating and brushing her teeth are also easier — as is playtime.

“She loves playing with dollhouses,” says Jennifer, “and with the use of the WREX, she can reach the second floor of the dollhouse, which she could never do before. She also does horseback riding, and this has helped with that because it helps with her balance.”

At a recent MDA Ride for Life event, Jennifer Mohn expressed to some other parents just how big of a difference this has made in Hannah’s life.

“I brought this up because [their children] have a lot of the same issues that Hannah had — and still does — and because of this piece of equipment, it’s basically taken that [mobility] issue out of the equation for her. I hope that people give it a chance, because it’s awesome,” she says. 

WREX has been used for individuals with spinal muscular atrophy and other muscular dystrophies. Consult with your doctors or MDA clinic team to see if this technology is an option for you or your child. Find out more at facebook.com/groups/wrexdevice.

 

MDA National Goodwill Ambassador Reagan Imhoff

Congrats, Reagan!

MDA National Goodwill Ambassador Reagan Imhoff recently surpassed 1,000 (and counting) fans on Facebook. The active 9-year-old doesn’t let her type 2 spinal muscular atrophy slow her down or prevent her from spreading awareness of MDA’s mission to save and improve lives. 

Not a fan yet? Join Reagan on Facebook today to support her work as MDA’s National Goodwill Ambassador.

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