Posts in the Personal Stories Category

Running with Wings

June 24th, 2014 | Author: Fabiana Talbot

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Bryne family “Running with Wings” staff.

Mary Jo Byrne was a loving mother, wife, and grandmother. Her family described her as “strict but passionate,” and all four of her daughters very much knew they were loved. Most of all, she taught her family to work hard, set a positive example, and take care of their own. Mary Jo lived with COPD for 20 years. The disease slowed her down and would try very hard to keep up with her family as best she could. She was a social person and loved shopping, but outings became increasingly difficult over time. The family said COPD was “cruel and debilitating.”

When the Byrne family lost Mary Jo to the disease, they decided to take action to raise awareness and funds. Now, they plan an annual race called the MK4MJ, which raises money for individuals who cannot afford rehabilitation and medication. We reached out to the Byrne family to learn more about their efforts:

Q: Tell us about your event.

A: A portion of the proceeds from the race goes to a scholarship fund that assists patients who can’t afford medication or rehab services. The scholarship fund pays for those services. The scholarship fund is in mom’s name.

Q: Organizing a race is a lot of work. How do you ensure success?

A: Our family and friends promote, promote, and promote the race. A lot of marketing and networking goes into the planning of the race. We are blessed with a lot of family and friends who are big supporters of the race. We have no payroll, and we shop and get the lowest price on everything we buy. Our biggest expense is the timing company and t-shirts. We also pray a lot!

Q: How do you get everything done?

A:

1. The first thing we did was to organize our staff and apply for the 501c3.

2. We chose a date, location, a timing company, registration company and set a budget. (Many requirements must be met at this stage.)

3. Set up the website, Facebook and Twitter page.

4. Created advertisement literature, sponsorship tiers, promoted as much as possible (Press Release, Local Event Websites, Email Blasts, Facebook Campaigns, Twitter, Newsletters, Health Fairs, Church Bulletins and etc.).

5. Had fundraisers (pizza night, bingo and etc.) to raise money to promote the race.

6. Organized volunteers for packet pick-up and event day, ordered t-shirts, and reviewed race day event.

7. Race Day, set-up, day of registration, 5k race, kids fun run and COPD Honoree Walk, clean up, and Prayed a lot!!! We could not do this by ourselves. It takes many volunteers, especially day of race.

Q: Is it hard to get involved with fundraising?

A: It is easy to get involved. The first year it was not hard to ask for money and people were quite generous, but the second year and years later, it becomes harder, especially during hard times. We are always trying to find other sources of income to support the race.

Q: Who are your supporters?

A: Local people that mother knew personally in the community. Business associates, Doctors, church members, family and friends.

 
We applaud the Byrne family for their great work with the MK4MJ, Running with Wings 5k race in honor of their mother. If you live in Shawnee, KS, tell your friends and family to register in support!

Want to take action to help others living with COPD? Visit the COPD Foundation’s Firstgiving page or join our Action Network today.

Make Your Ripple

March 24th, 2014 | Author: Katelyn Turner

Despite being the third leading cause of death in the U.S., COPD is still unknown to many people. Bhavya Malladi and her grandfather, Evani RJ Rao, were among those people when he was diagnosed with COPD in October 2012. Upon his diagnosis, the lack of awareness and knowledge of such a devastating disease shocked Bhavya. She has since made it her mission to educate people around her so that no one else she loved would have to suffer the way her grandfather is.

Evani, 70, spent his life working as a hydro-geologist in India, and was exposed to dust from open field drilling. Although he quit smoking at the age of 53, Bhavya attributes the toxic fumes from his job and 20 years of smoking to her grandfather’s diagnosis. Within a year of being diagnosed, his condition drastically worsened. As she lives in California, and her grandfather lives in India, long phone calls with him have unfortunately become a thing of the past, because simply talking for a long period of time is too exhausting for him.54294429-58e7-4663-a573-6dd5ac829dd3

A fond memory she holds of Evani are long walks with him and her brother to a local candy store in India where they would buy their favorite chocolates and candies. They would walk back home while listening to him tell stories of India. As the years have progressed, this tradition has become impossible for Evani.

Seeing this debilitating disease progress so rapidly, Bhavya began to ask herself, “Why is it still so unfamiliar to people?” Bhavya has decided to honor her grandfather by making a difference.

“Never underestimate the difference you can make. Remember, even a tiny drop can make ripples,” she says.

When her Rangapravesam, an Indian classical solo dance debut, approached, she decided to make a ripple. (Bhavya has been learning an Indian Classical dance form called Kuchipudi since she’s been five. Rangapravesam is an event when the teacher introduces the student to a bigger audience. This event is a student’s solo repertoire two hours long, with a live orchestra.)

In lieu of flowers and gifts for her performance, she asked her guests to donate to the COPD Foundation through her online fundraising page on FirstGiving. She included a small pamphlet in her invitations, and also set up an information booth with COPD brochures for the 500+ attendees. This was her opportunity to spread awareness in her own way.

Bhavya’s ultimate goal is “to spread the word about this disease, so people know about it and take care of it in its early stages,” something they could not do for her grandfather.

To date, she has raised $3,428 for the COPD Foundation’s efforts to spread awareness, educate members of the community, and to one day find a cure.

You too can do your part and make your ripple. Contact the COPD Foundation to find out how you can set up your own Firstgiving fundraising page and make a difference just like Bhavya continues to do.

Please call 1-866-316-2673 or visit: www.COPDFoundation.org for more information.

Leonard Nimoy of Star Trek Diagnosed with COPD

February 10th, 2014 | Author: Fabiana Talbot

Leonard Nimoy, famously known for his role on Star Trek as Spock, announced last week that he has COPD.

“I quit smoking 30 yrs ago. Not soon enough. I have COPD. Grandpa says, quit now!! LLAP,” Mr. Nimoy tweeted.  His announcement sparked a  conversation about COPD online with many asking, “but how do you have lung disease if you quit so long ago?”

It is so important to share with our loved ones that even if a smoker has quit, s/he can still develop COPD. Lung damage is irreversible and progressive (gets worse over time) and often goes undetected and undiagnosed until 50% of lung function has been lost.

12 million Americans have COPD and don’t know it.

That said, progression slows dramatically the earlier someone quits smoking. Tell your friends and family to quit today!

May Mr. Nimoy LLAP (live long and prosper) and continue to educate others to raise awareness about COPD.

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Phil Everly Memorial

January 7th, 2014 | Author: Katelyn Turner

 The COPD Foundation would like to express our heartfelt condolences to Patti Everly and her family on the loss of her husband, Phil Everly. We are grateful to them for extending his legacy by making a commitment to support our efforts to eradicate this disease. We are motivated by their support to continue to make progress through research to ultimately find a cure for COPD, so individuals such as Phil will not have to suffer.

Phil passed away Friday, January 3, 2014 in Burbank, Calif. at the age of 74 due to complications from COPD. The Everly family would like contributions to be made in memory of Phil to the COPD Foundation, to help us fight this terrible disease.

Photo courtesy of Patti Everly

Photo courtesy of Patti Everly

According to the LATimes.com, Phil Everly and his brother Don made up the most revered vocal duo of the rock-music era, their exquisite harmonies profoundly influencing the Beatles, the Beach Boys, the Byrds and countless younger-generation rock, folk and country singers.

Phil Everly was born in Chicago, IL on January 19, 1939, but grew up in Iowa. He began singing country music with his brother in 1945 on his family’s radio show in Shenandoah, Iowa. Notable songs of the Everly Brothers was “Cathy’s Clown”, “Wake up Little Susie”, “Bye Bye Love”, “When Will I Be Loved”, and “All I Have to Do is Dream”. The Everly Brothers were inducted into the Rock ‘n’ Roll Hall of Fame in 1986, and were known for mixing rock ‘n’ roll music with country music. Phil Everly last performed in public in 2011, but his son Jason said he had been actively writing songs, living part of the year in Burbank and the rest in Nashville. He said his father had been in the hospital for about two weeks when he passed away. Though the COPD caused by smoking affected his health, Jason Everly said it never affected his voice. Everly married his third wife Patti (current wife) in 1999. His 2 children are from previous marriages.

The Everly family thanks you for your support in memory of their angel.

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Pennies for Penny

October 29th, 2013 | Author: Katelyn Turner

Nicole says her mom Penny was a fighter—someone who never let COPD get in her way.

“I never saw her suffer, or just laying in her bed. The day before my mother passed, we were watching a Browns football game together. She was wearing a Browns t-shirt and hat, and it was 14-0 [Browns were losing], fourth quarter. All she kept saying was, ‘the Browns still have a chance to win,’” Nicole recalls. “She was in such good spirits right up until her last days.”

After her mom passed away, Nicole felt as though she had to do something to honor her.

Nicole and Penny

Nicole and Penny

“My desire has always been to give back, and do something for people who had COPD. I saw how the disease took over my mother and I wanted to do something to support those [living with COPD],” Nicole says.

That’s where “Pennies for Penny” was born—out of Nicole’s desire to help others. She reached out to friends, family, and co-workers to garner feedback, and created her first fundraising tools, a Bingo game that features sayings from Penny, and a Penny trivia game. Nicole used these at her first fundraiser September 28th. She’s planning on hosting a second fundraiser, a pancake breakfast, during November—COPD Awareness Month.

In addition to hosting fundraisers, Nicole, who lives in Cleveland, OH, says she also set up a FirstGiving Page with the COPD Foundation, encouraging friends, family, co-workers, etc. to donate what they can.

“I want to do something all year-round. Cleveland Clinic is a big hospital here, and I’ve been thinking I’d eventually like to work at the pulmonary department there. I am looking to work in public health, once I complete school,” Nicole says. She’s currently majoring in business management as a local community college.

She says her mom loved to spend time with family, including Nicole’s children Butchie and Eleah, and made others so happy—so it’s nice to see others step up in memory of her.

“That’s why I want to go into public health to help people like my mom—I want to follow my vision and make it happen,” Nicole says. “I think anything starts off with a  vision. If you have the passion to do it, your vision will come to you.”

“I had no idea what to do when my mom passed. First, it was like, ‘she’s no longer here.’ After that, I thought, ‘let me do something to honor my mom,’” she says. “I miss so many things about her, but my love and compassion keeps me going.”

Change Your Attitude

September 27th, 2013 | Author: Jim Nelson

This blog post was written by Jim Nelson, an individual living with COPD. Read more…

Pulmonary Rehab Helped Him Turn His Life Around

August 12th, 2013 | Author: Katelyn Turner

At one time, Sylvester Catherman could barely walk 300 feet without having to sit down. Read more…

Mind Over Matter

July 19th, 2013 | Author: Katelyn Turner

Kim Lynch says when she was diagnosed with COPD 10 years ago, Read more…

Air Quality from a User’s Viewpoint

April 26th, 2013 | Author: Jim Nelson

This is a guest blog post from Jim Nelson, an individual living with COPD. Read more…

Have you subscribed to the COPD Digest?

April 15th, 2013 | Author: Fabiana Talbot

COPD Digest is the first free, internationally-distributed magazine Read more…