Special Events Stories and Photos

North Texas Fun Walk Q&A
By Edward Freundl

Diane Dauwalder of Ft. Worth, Texas, and Marcia Beverly of Dallas are proving that combining forces for a common cause can lead to spectacular results. Not only are they PH patients and support group leaders in their respective communities, but they have co-chaired a PHA Special Event, the North Texas 5K Run and PHun Walk, now in its sixth year. We asked them to tell us more about the event, which will take place Nov. 3 this year.

Diane Dauwalder with friends Loretta and Miranda, at the finish line of the 4th annual North Texas PHunWalk in 2010Diane Dauwalder with friends Loretta and Miranda, at the finish line
of the 4th annual North Texas PHunWalk in 2010

Q. What made you decide to host a PHA Special Event?

Diane: Like everyone else, it took forever for me to be diagnosed; [I went to doctors in] three different states and nobody knew what PH was. We needed to get the word out about PH so others would get diagnosed earlier.

Marcia: I am co-leader for the Dallas Support Group and we work together with the Ft. Worth group a few times a year. We wanted to do a fundraiser and this seemed the easiest way. Our first PhunWalk was in 2007.

Q. Why is it important for you to hold the event in November, during PH Awareness Month?

Diane: Because it is Awareness Month. [Having a PHA Special Event] in November along with everyone else may get more publicity. We moved it from the middle of November to the first few days of the month while the weather is still good. Our 2012 PhunWalk will take place Nov. 3.

Marcia: We thought November was a good time since it is Awareness Month and at that time we were doing everything we could to spread awareness. It is also a good time for the North Texas area because it is much cooler and the fall is wonderful.

Diane Dauwalder “runs” through the finish line of the 2nd annual mile walk during the 2008 North Texas PHunWalkDiane Dauwalder “runs” through the finish line of the 2nd
annual mile walk during the 2008 North Texas PHunWalk

Q. How does your event raise awareness for PH?

Diane: It brings up the question, "What is PH?" Most people think as soon as you say "pulmonary," you are talking about COPD (chronic obstructive pulmonary disease); when you say "hypertension," they relate to the other high blood pressure and don't even know there is one that affects the lungs. Fundraising, solicitation and talking to people raises awareness. If only one person out of hundreds gains some knowledge of PH, then it has been a success.

Marcia: At first, for me, it was making my friends and family aware because I wrote them a letter about my illness and asked for donations to a FirstGiving web page. It has grown since then. They knew I was ill, but this way I can give them some details and I'm trying to get them involved.

Q. How has the event grown over the years?

Diane: The first few years we had only patients and their families. And there were not a lot of us in North Texas. Also, not all of us were able to participate due to illness. But we still had fun. We did a $1 raffle of donated items and everyone was able to go home with a prize. Last year we had about 150 in attendance and this year we are looking at close to 500 people. We've gone from raising $3,000 our first year to $9,000, and this year we hope to double that. This year we are at our third park. We have patients who live in that community, and that helps to get sponsors. Local businesses don't want to be left out if other businesses are participating.

Marcia: We started with just the two combined groups of Dallas and Ft. Worth. When we are combined, we call ourselves the North Texas PH Support Group. In the beginning, it was just patients and families, plus the medical staff at our clinic. We had about 60 people. The raffle was mostly garage sale-type items. We had a minimal amount of food and asked people to bring a dish.

The next year we had about 100 people and had some friends of patients join us. It has continued to grow each year. At our fifth event, we wanted to expand, so we added a 5K PHun Run. We didn't have much help, so we just did the best we could. We had only 10 runners, but that was 10 more than the year before. This year we have a committee, with two members who are runners and are not sick, so we are already off to a major start. We had our first runner sign up in April!

A PHA table is always set up near registration with a greeter to welcome everyone and give out information as appropriateA PHA table is always set up near registration with a greeter to welcome
everyone and give out information as appropriate. The jewelry consists of
“Hope” bracelets that Diane Dauwalder makes and sells for $5 each, with
all profits going to PHA. In 2011 they sold out

Q. What has been the greatest key to the event's success?

Diane: For the 5K race, because we are obviously not runners and never organized a race, we had no clue what we were doing. We hit a lot of dead ends and found out it costs money for timing racers and tags. We learned a lot.

This year is very different and the big key to our success will be the efforts of two healthy people; one is a mom to a PH patient in our support group and the other lost their dad to PH. These two people are helping us take our event not just to the next level, but many levels up! We also have very well-done sponsorship packets and have sites up on Active.com and Facebook, along with a PHA Support Group blog.

Marcia: The growth is due to word of mouth and Firstgiving. It is so easy to set up your own web page on Firstgiving.com and let your friends and family know about the event. Having this wonderful committee with people knowledgeable about 5K runs and sponsorship to help us and using a professional group for the 5K run has taken this event to a whole new level. In fact, I think we skipped a few levels and are greatly expanding.

Q. What has been the most difficult obstacle to overcome?

Diane: Getting sponsors and media attention. Previously we have done it all ourselves with help from family and friends. We sent out news releases and emails to media but received no attention.

Marcia: For me, personally, it has been the media challenge. Local media has been zilch but that will change this year. I have worked for six years to get anything on TV or newspaper and met with no success. I suppose I could have tried harder but it has been intimidating. I think this year, with all the things we have going on and our great committee, we will succeed in getting some media attention. We have done this ourselves, and last year was too much work for patients to do ourselves. In order to grow we knew we needed more help, and now we have it.

Q. Your PhunWalk is support-group driven. How does that work?

Diane: Everyone pitches in. We ask all to be a part of the event committee, but not everyone is able to participate. We just hope they all come to the event. We try to share responsibilities so it is not too much for any one person.

Marcia: The support groups are the main participants and they bring their family members. Some create their own FirstGiving page and raise money in that way, and some sell raffle tickets. We haven't had any outside resources - except for our drug reps - until this year.

Q. What advice would you give to other event organizers?

Diane: Don't get discouraged when starting out. Don't burn yourself out, either. Keep on talking, passing out fliers everywhere: doctor offices, grocery stores, etc., and people will begin to ask and inquire. If you only get one person to learn about PH, you are a success.

Marcia: Start small with just your own group and make it fun. It will grow every year. Use Firstgiving and Facebook to your advantage.

Q. What types of programs do you offer during the event - balloon release, raffles, bike parade, etc.?

Diane: We now have a $5 raffle, we have always had a balloon release, and we introduced a 5K run last year.

Marcia: In the past we have had the raffle and lunch. This year we are really thinking out of the box with maybe a costume contest among the runners, a band, a coffee station and more vendors. This year we want to make it a memorable PHun Walk, since our two leaders of the Dallas and Ft. Worth groups have passed away. They were the ones who actually got it started. In addition, our committee chair this year lost her father to PH. We are looking at having an "angel board" at this year's event. We've always had a lavender-and-white balloon arch and do a balloon release at the end. We look for a dog-friendly park with a pavilion, nearby restrooms, parking and playground, as well as a walking/running trail.

Q. What is the mail goal you hope to achieve through the event?

Diane: Public awareness and funds for research to cure PH. They've come a long way since I've been diagnosed, and it's all about hope.

Marcia: Those members of our group who are not on the committee are kept abreast of the latest happenings, and we start early. We hope to have the raffle tickets ready by our annual picnic in May so that everyone can get started selling and feel like this is a group effort. It is not enough simply to attend. Everyone needs to get involved and I'm doing my best to make that happen. We also have our sponsorship packets ready and everyone can start asking for sponsors or donations with this packet of great information. For me it is a tool that helps me feel confident when asking for a donation. 

Photos courtesy of Diane Dauwalder

 

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