(Today’s blog is written by Marita Eddy, a Mercy Medical Airlift staff member embedded at the National Institutes of Health’s Office of Rare Diseases Research. Marita has served as the transportation coordinator there since 2004, arranging charitable flights for NIH patients using both commercial airlines and Angel Flights. The patients she assists refer to her with admiration and affection. “We love Marita,” are the words most often said of this warm-hearted, intelligent, and hard-working lady who is publicizing a very important project–finding cures for rare disease patients.)

  Around the world, today is known as Rare Disease Day, and I am involved, both personally and professionally. I challenge you to get involved, too. I’m not a scientist or a physician. I’m not active in legislative or policy-making pursuits. But I do have a family member with a rare disease. I listened to my brother as he worried every time his young son got sick. Even if it was just a cold, he had to be rushed to the hospital because his lungs might collapse.

That was 20 years ago. Through advances in medical research, technology and treatment, my nephew grew up, graduated from college and is a fine young man. He still has medical issues, but when he was born, life expectancy for a child with cystic fibrosis was 10 years.

Currently, about 7,000 rare disorders have been identified, of which about 80 percent are genetic. Although a rare disease affects fewer than 200,000 individuals in the United States, according to the National Institutes of Health (NIH), an estimated 25 million Americans have a rare condition.

Some of those patients come to the NIH Clinical Center to participate in research studies. As transportation coordinator for Angel Flight at NIH, I may be able to help them with their air transportation needs. Angel Flight at NIH is sponsored by the Office of Rare Diseases Research and is a service of Mercy Medical Airlift. We provide flights of hope and healing for patients who otherwise would not be able to afford the cost of flying to their long-distance medical destination such as the NIH Clinical Center and facilities participating in the Rare Disease Clinical Research Network (RDCRN).

But today I’m joining scientists, physicians, researchers, health care providers, policy experts, advocates, patients, families and friends of those who suffer from rare diseases to participate in events to raise awareness about rare diseases and the importance of research to develop treatments and find cures.

What can one person do? Well, I’m wearing jeans today as part of the Global Genes Project and attending Rare Disease Day @ NIH, which is an event that is free and open to the public at the NIH Clinical Center in Bethesda, Maryland. Visitors will learn about the Bench to Bedside and Undiagnosed Diseases Programs, as well as find out about rare diseases and translational science and the role of the NIH Clinical Center in the national clinical research spectrum.

What can one person do? You can support our efforts to provide transportation to patients by donating your unused frequent flyer miles. You can learn more about rare diseases, advocacy organizations, and what is being done internationally. Oh, and don’t forget to wear your jeans.

This past Monday evening, the Mercy Medical Airlift Board of Directors met for their first quarterly meeting of 2011. I was invited to attend, in part to be introduced to the board, but also to continue my education into the world of MMA and non-profit management. While this wasn’t my first exposure to the proverbial boardroom, it was my first time meeting the folks that provide the guidance for MMA. Other than concerns about the weather (which were pretty much unfounded), the trip went well, and I am very happy to have been afforded the opportunity to attend.

Something I didn’t know about directors in a non-profit is that they don’t take any compensation. In retrospect, I realize this understanding shouldn’t come as much of a surprise, but I guess I’d just never made the connection. So this group of men and women dedicate their energy and time (and for many, we’re talking considerable amounts of time) playing their vital role in the overall mission.

One agenda item that provided quite a bit of comfort to the new guy in the room was the one that read “Board of Directors Self-Evaluation.” The group had begun a process last year that would provide an opportunity for some self-reflection and evaluation, and a mechanism to review those thoughts together at the next several meetings. But what was reassuring was that this direction was not the action of a board in crisis attempting to right the ship. As evidence, one just needs to look at the financial stability coupled with program growth this organization has experienced in the past several years.

What the board’s project is about, though, is asking the question, “We do this pretty well now … but how can we do it better?” That’s a great perspective. It is easy to recognize the potential need to change when you’re failing. It’s even easier to enjoy success and rest on your laurels. To reflectively look at yourselves when you are succeeding is a much different story. And I’m glad to be part of an organization that isn’t afraid to ask itself the difficult questions.

Corrie, a patient with Takayasu’s Arteritis, kisses her son, Canaan. To date, Corrie has received three free airline flights to Boston Medical Center where she is treated by a leading specialist, Dr. Peter Merkel. Her next medical trip is planned for March.

I looked up the origin of the word charity, which means “benevolence toward the poor” and is derived from the Latin word caritas, meaning “costliness, esteem, affection.” It’s often translated as “love.” It’s why people give of their wealth, their time, their attention.

This week a check came in the mail for $30,000 made out to Air Compassion for Veterans, one of our charitable programs, and donated by a widow who wanted to memorialize her husband who had served in the Air Force for several decades. What an astonishing gift! We also received a dollar bill designated for Angel Flight that was mailed by a minister serving in New Mexico. What an astonishing gift!

All the funds we receive, whether large or small, provide huge relief for those in need. Consider these words from Corrie, one of our rare disease patients: “When I see confirmation that they’ve bought our airline tickets, I think, ‘they’ve spent $800-$1,000 to save my life.” Another patient writes, “I am amazed at the gift you have given me. The treatment at Mayo is going to restore my optic nerve, allowing me to see again!”

That’s the face of charity here at Mercy Medical Airlift.

Map of Virginia shows gaps in public transportation for medical patients.

One of the projects I’ve been working on since joining Mercy Medical Airlift is Angel Bus. Angel Bus is a program started by Bill Connor back in 2000 that uses motor coaches and their drivers to transport medical patients in the same way Angel Flight does with volunteer pilots and planes. After Mr. Connor’s passing, MMA was asked to take over the organization, and we’ve been operating it since 2009. (See www.Angel-Bus.org.)

In the next two years, we will be operating a pilot project in Virginia, expanding Angel Bus beyond volunteer drivers. Last year we learned that 90 percent of patients at the state’s free health clinics, who are referred to one of two specialized treatment centers, are unable to keep those appointments because they don’t have access to the transportation resources necessary. Can we utilize public transportation, be it rail and bus, to help these patients get to the more specialized care?

As we work to find the best (read: efficient) way to make this happen, I’ve taken a map of Virginia and referenced public transportation routes and stations, crossed with the locations of free clinics and health care centers locations across the Commonwealth.

It immediately jumps out … We’ve got our work cut out for us. While many of the facilities are on or near these stations, there are just as many facilities that are not. That is one of the many tasks in front of us as we take on this project. But the news is also good. Now, instead of finding ways to get folks from Blacksburg to Charlottesville (one of the two locations of the specialized treatment centers; Richmond is the other), we just have to find a way to get them from Blacksburg to Roanoke.

It is very interesting to be a part of this program as we form things up. While my learning process has given me insight on how our existing operations work, seeing a new program built up from the inside is a much better way of learning how it works.

Special Persons have fun to spare at a bowling party.

This week I got to call on my favorite business partner, Special Persons, on Tulip Drive. This is a mailing service located a couple of miles from our office that handles our bulk mail—newsletters, Christmas cards, important notices. I walk in and greet Heidi, Jennifer, Larry, Wanda, Richard and the others, and they greet me. Sometimes I get hugs too. Mary Kay, the office manager, keeps the staff—her “kids”—on task as they skillfully stuff envelopes, apply labels, stamp permit numbers on flyers.

The founder and president of this cheerful group of mentally disabled employees is Art Roy. He and his wife, Floy, established the nonprofit company in 1991 so their daughter, Jennifer, who has Down Syndrome, and others like her, would be able to find a meaningful niche in the world.

What started out with Jennifer and four friends handling a couple of mailing jobs as volunteers at the Roys’ kitchen table is now a staff of 33 paid employees. They come to work in a 3,650-square-foot and fully-paid-for building to provide service to some 200 clients of Special Persons Mailing Service, Inc. Their parents volunteer a couple of days a week to assist with more complex tasks such as sorting zip codes.

You can’t help but feel the family spirit. There are times I’ve walked in when the front work space was largely deserted, but I could hear music and laughter coming from somewhere else and was told a birthday party was in progress. Celebrating birthdays is a monthly event.

The fun extends beyond the office walls. In the summer, Art and Floy hold pool parties for the gang at their home in Virginia Beach. There are bowling parties and Christmas parties and visits with Santa. Art showed me a photo album with picture after picture of the kids taking turns to sit on Santa’s lap.

People magazine featured Special Persons in the May 15, 1995 issue, illuminating the Roys’ tender concern for their daughter and others with her condition: 

The Roys have been fighting for their daughter since she was born. At the time, recalls Art…“everybody said, ‘Don’t take her home. She’s not going to have a normal life.’” But the Roys, convinced that putting people with Down syndrome in institutions tends to shorten their lives, did take Jennifer home…”She has always been a joy and the focus of our lives—it’s been a happy time,” says Art.     “Down syndrome children are real loving; they teach you a lot about patience, love and understanding.” 

That’s the reason I always look forward to my trips to Tulip Drive. A kind of childhood innocence is always in bloom at Special Persons, and I know I’ve been given a gift—a song for my day.

Ron Calugar, a Virginia Angel Flight pilot, serves patients in the Commonwealth by transporting them to specialized care. The annual legislative reception is a good way to spread the word so lawmakers and their constituents can learn about the charitable programs of Mercy Medical Airlift.

When you run the variety of programs that we do at Mercy Medical Airlift, it is important to keep things straight, both internally and externally. To the latter, several members of the staff attended the annual Aviation/Aerospace Legislative Reception at the Library of Virginia in Richmond this past Wednesday evening.  It was an opportunity to celebrate the state of aviation in the Commonwealth, but also to network with state legislators and take the opportunity to brief them on what we can do for their constituents.

I talked for several minutes to a delegate from western Virginia. She spoke of fundraisers that people locally have initiated to raise money for medical treatment for those in need, but, she reminded me, they still face the challenge of getting to that treatment, as specialized healthcare facilities are much more spread out in that section of Virginia (something I am well familiar with based on my work with Angel Bus). That is, as they say, where we come in. Our volunteer pilots and driver programs exist to help these folks out.

It was also inspiring to see one of the youth programs on display. There was a team of high school students from Hampton that work with NASA to build robots. Let me say that again … High school students building robots. The NASA Knights have taken their work and competed nationally to great success. I didn’t exactly waste my high school years, but neither was I building robots.

It was a great event, and I’m glad we had the opportunity to attend. Talking to state officials and their legislative aides is a critical part of getting our programs out in the community to greater use.

These volunteers earned their angel wings as Pilots of the Year for 2009. The picture was taken at the annual Gathering of Eagles pilot appreciation banquet in Virginia Beach.

Today is a good day to roll out the red carpet of this blog in honor of the newly-announced Angel Flight Pilots of the Year for 2010. These awards have been given to our top flight pilots since 1997 and are announced each January. While all our volunteer pilots are exceptional individuals, donating their aircraft, time, fuel, and all other expenses associated with charitable, medical flights, the Pilots of the Year are generally those who have completed high mission counts and performed unusual service such as transplant missions. They will be honored in April at a pilot appreciation banquet held each year in Virginia Beach.

The Pilot of the Year for the entire mid-Atlantic region is Dale Shymkwich of Arlington, Virginia. He is also the Pilot of the Year for the Commonwealth of Virginia. The winners of the award for the other mid-Atlantic states are as follows:

Delaware: Brett Lunger

Kentucky: Tony Schmidt

Maryland: John (Bill) Werking III

Michigan: Dick Lawrence

North Carolina: Kenny Hardin

Ohio: Charlie Poll

Pennsylvania: John Clough

Tennessee: Stephen Brumit

West Virginia: Cleve Benedict

Congratulations to all these true humanitarians who volunteer to ensure that patients in need find “the shortest distance between home and hope.”

It’s funny, when you really look at it, how comparable certain things are at Mercy Medical Airlift to my previous industry. You have operators, like me (previously) who execute the mission. We can’t do it, though, without funding. In the hospitality industry, it’s the sales and marketing teams that bring people in the door. Here at MMA, we depend on donations, from a variety of sources, to get our operating budget. One of the many things I’m working to get a better understanding of is how that process works. 

Our director of development, Gil McMillan, shared with me this morning a posting from an email blast he receives on fundraising. Authored by Sandra Ehrlich and Dawn Miller, it describes “Seven Key Reasons Donors Make Transformational Gifts.” The post says most organizations may qualify into several of the reasons. Gil’s point to me is that MMA, and our partner charities, represent all seven reasons. Let’s take a look: 

• “They believe in your organization’s mission, core values, and vision.”  

MMA is a relatively small organization, without the national name recognition of organizations like the American Red Cross or Stand Up 2 Cancer. For people to be aware of us and give to us, it means they have gotten to know who we are and what we do … but most importantly why we do it. 

• “They believe in your organization’s unique qualifications to provide programs and services, both now and in the future.”

This is a funny-sounding statement, but we’ve been doing what we’re doing long before we ever existed. Our Founder/President/CEO/Guru has been involved with charitable air transportation long before he started Mercy Medical, and people know that about him. He’s been called the father of charitable air transportation because he’s been a pioneer for so very long. 

• “Their gift will change or save a life.”

Our mission coordinators Cathy, Ashley, Charlee, Robin, and Cathy II change lives every single day. The rest of us help in our own special (and important) ways, but these ladies are on the front line, coordinating with pilots, in-taking patients, and providing guidance that affects lives all day. 

• “They want to make a difference in their community through your organization.” 

I’ve found that our gifts come from all over the country—from villages, towns, boroughs, parishes, townships, and cities everywhere. We are able to serve so many people from all over the country that every donation we receive can benefit the community the donation comes from. 

• “They believe your organization will use the funds effectively per their intent.” 

We pride ourselves on how efficiently we operate. When you look at how much, on a percentage basis, other organizations spend on actual programs, and you look at how close our number is to 100%, it is astounding. As I’ve said before, I’m an efficiency nut, so this is an impressive statistic as far as I’m concerned. 

• “They want to join others in a valuable cause.” 

How do you define a valuable cause? Helping an injured vet get home to see his family? Maybe it is facilitating a cancer-stricken mother’s trip to Boston for treatment? Or volunteer pilots flying hundreds of patients to appointments across the mid-Atlantic. These are just some of the things we did last month. 

• “You asked them to make an investment in your organization and community.” 

Providing a gift isn’t solely about providing us with funds to operate our programs. It is about trusting in our ideals, in our goals, and in our mission. Participating in what we do is an investment, but in so much more than just our organization.