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No, Not THAT Colorado

Aileen Colorado lives on through a fund her Midlothian family set up to help others living with muscular dystrophy

Article by Mary Ellin Arch

Photography by Hunter Henkel Photography & Provided

Originally published in Midlothian Lifestyle

Usually, when people first hear about the Colorado Fund, they’re a little confused, mistakenly assuming it has something to do with that state out west with the Rocky Mountain ski resorts.

But “Colorado” is the name of a Midlothian family that honors one of its own through grant-giving to help improve the lives of people with muscular dystrophy and other neuromuscular disorders.

The Colorado Fund for Muscular Dystrophy, also known as CFMD, preserves the memory and legacy of Aileen D. Colorado. Born with muscular dystrophy, Aileen refused to let her condition interfere with living her life to the fullest. She enjoyed an active childhood of school, activities, and camp, then went to college where she organized her own support system to personally manage her care and graduated with a degree in communications. Afterward she worked for nonprofits and the Virginia Department of Aging and Rehabilitative Services. Her advocacy for people like her with neuromuscular disorders resulted in two Personal Achievement Awards from the regional and state Muscular Dystrophy Association.

Following her death in 2011 at age 36, from complications from pneumonia, Aileen and her work were memorialized in two ways. The Department of Aging and Rehabilitative Services established the Aileen Colorado Champion Award, given to a young professional with a disability who displays Aileen’s leadership and talent. And, her family launched The Colorado Fund.

“We talked about it pretty immediately, and turned to figuring out the logistics,” says Stephanie Colorado, Aileen’s sister, who also lives with muscular dystrophy and serves on the fund’s board as treasurer.

“We recognize that both Aileen and Stephanie are lucky to have resources and opportunities, and we want to be able to share that,” adds Lori Colorado Dodd, a cousin to the sisters who serves on the fund’s board as secretary.

What’s commonly known as “muscular dystrophy” is actually a collection of progressive neuromuscular conditions that limits mobility, breathing, and other bodily functions. Muscular dystrophies are estimated to affect 250,000 people in the United States. Breathing disorders, along with related brain, nerve and muscle diseases, are the leading causes of death related to these conditions. The Muscular Dystrophy Association and the Lewin Group, a health services consulting group, studied three common neuromuscular disorders and set the total estimated cost of illness to the nation at $1.07 to $1.37 billion per year. (Findings were published in a peer-reviewed summary report in Muscle and Nerve in 2013.) The conditions affect both children and adults.

The Colorado family and longtime friend Steven Casupanan make up the nonprofit’s board. Board members meet several times a year to plan fundraising and visibility activities and review grant applications. “We focus on quality of life,” says the fund’s president, Zeni Colorado Resa, another cousin to Stephanie and Aileen.

Steven, the fund’s vice-president, grew up in Midlothian with the Colorado family within the Filipino American community. “Aileen personally helped me during a rough time of my life,” he says. “She hired me to be her driver to and from work as well as an assistant to help her with miscellaneous things. One of the biggest lessons Aileen taught me is how to simply ‘get back up’ and have a positive mental attitude regardless of your circumstances.”

Charity activities are organized each year to raise money to allocate as grants. Funds come through donations and events like bake sales and profit-sharing nights at local restaurants – for a while, there was an annual 5K race. Visibility is obtained through Google and Facebook ads and other social media methods.

The fund is often used to help children with neuromuscular conditions afford special summer camps, which can cost up to $2,000 per week per child. Both Aileen and Stephanie found annual camp experiences critical to their personal growth, in addition to providing an outlet for fun.

“To do things away from Mom and Dad builds basic life skills,” says Stephanie. “You learn how to advocate for yourself and to ask for the help you need.”

Grants are also made to help those with neuromuscular disorders afford life-enhancing equipment and amenities. Grant recipients tell poignant stories about how the Colorado Fund improved their quality of life.

Lena Jackson of Chesterfield was looking for a way to upgrade her manual hoyer lift to an electric one when she heard about Colorado Fund from her physical therapist. "I was initially confused by the name," she recalls. "I was amazed that it was in Virginia and based in Midlothian!" Lena, whose form of muscular dystrophy, limb girdle, is progressive and worsened in her 30s, used her grant to purchase a used hoyer lift, which "opens up so many possibilities."

"It allows me to sit in a chair more often. It eliminates strain on my family members who help to lift me. It folds and fits in the van, so we can take it on vacation," Lena says. "It is a blessing. It really touched my heart. It sounds cliched, but it's helped me not to give up on my future, to take a step closer to reaching my other goals in life."

A mother of two boys with Duchenne muscular dystrophy, who asked to be identified as Nicole E. of Northern Virginia, heard about the Colorado Fund from a friend and found Stephanie via Facebook. Nicole's dream was to build a deck with a ramp so her boys could navigate their wheelchairs out of the house for outdoor fun.

"Stephanie made the whole process simple and easy," said Nicole. She says that in addition to offering a way for the whole family to share an outdoor dinner, go stargazing and observe wildlife in the woods behind their home, the deck and ramp now provide "a second handicapped ramped exit out of our house in case of emergency."

Nicole particularly appreciates the Colorado family's empathy and support. "A diagnosis like muscular dystrophy is not easy for anyone," said Nicole, who recently lost one of her sons to the disease. "I know the Colorado family understands this concept as much as we do. Despite having their own struggles, they go out of their way to help others in the same boat. We are forever grateful for their help and generosity."

Maria K.B. of Richmond developed her neuromuscular condition in her 30s. She sought assistance from the Colorado Fund to upgrade her manual wheelchair to a motorized one.

"It's definitely increased my independence, not to have to rely on anyone to push me around," says Maria, now 47. "It also lifts straight up and helps me get things from cabinets, and it reclines and has a footrest so I can put my feet up. It's more cushioned and much more comfortable." She adds, "It's hard, day by day, to go through something like this. This is a family that's aware of that. They are inspirational."

Stories like these provide the Colorado family and board with the motivation to continue their work – and to expand as a nationwide organization. “If there’s anything we can do to improve someone’s quality of life, we want to do that,” Stephanie says.

To date, the Colorado Fund has distributed more than $28,000 in grants and camp sponsorships.

Upcoming local fundraising events:

  • Nov. 7: Mosaic restaurant, 6229-A River Road, Richmond, in honor of Aileen’s birthday, 13% of pre-tax food purchases donated to CFMD for those dining at dinner. mosaicedibles.com
  • Every Monday in November: Charred Swift Creek, 13451 Hull Street Road, Midlothian, $1 from every pizza sold donated to CFMD. charred.restaurant

To learn more: coloradofmd.org
Donate: coloradofmd.org/donate

Table of Contents photo is by Kate Quinn Photography

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