Posts Tagged awareness

Running for his Father and the COPD Community

January 5th, 2015 | Author: Katelyn Turner

Justin Daniels is a distance runner from Richmond, Indiana who is dedicated to honoring those who live with COPD by racing in all 50 states in 2015. He started his hobby when his father Leonard, 60, was diagnosed with COPD. “His lungs don’t work very well, so I am making it my mission to spread awareness about this disease,” Justin says. “I set up a booth at each event I am running with information that I am able to pass out to anyone wanting to know more about what I am doing. My mom helps pass out the information while I am running my races, but before and after I am at the booth or walking throughout the area asking people if they know someone living with COPD.”

The COPD Foundation caught up Justin to learn more about his efforts:

Q: How long have you been a runner?

A: I started out running while I was in high school as a Junior and Senior where I was a member of the cross country team as well as the track team. I started getting serious about distance running in 2011 wfaces1hen I found out  my dad had COPD. I felt like I needed to do something not only for him but for everyone else living with the disease. I knew there wasn’t much I could really do besides make people more aware of what COPD actually is, as well try and raise money to help find a cure.

Q: How did you get involved in raising awareness for COPD?

A: I feel there are so many people living in the United States alone that know nothing or very little about what COPD is and how they can get treated to live a better life. I have worked at Reid Hospital in Richmond, Indiana for almost 2 years now and I see a lot of COPD patients in the ICU. I feel that with increased education they might be able to avoid a trip to the hospital and could have a better chance at living a more normal life.

Q: When you started your endeavor two years ago, what was your main goal?

A: When I first started doing the marathons 2 years ago, my main goal was to run a marathon in honor of my dad and everyone else living with COPD. After running that first marathon I felt like I couldn’t do another one because of the pain I was in, but after awhile I thought about how my dad and everyone with COPD endure a lot more pain, so I continued.

Q: What are your goals now?

A: My current goal is to run a marathon in all 50 states; I would like to do this as soon as I can. On November 1st, 2014 I completed my 4th marathon – my biggest and toughest race so far. I raced the Chicago marathon on October 12th, 2014 and I wanted to see how I would feel after only taking 2 weeks off. I actually felt really good, so now I know I can run races closer together. I feel running in every state will give me a chance to spread the word and pass out information to as many people as possible –  just in case they have symptoms so they are able to get checked out by their doctor. It also gives me the chance to meet COPD patients that live with the disease on a daily basis. I want the races to give patients hope and reassurance that there is someone out there taking action to give them a voice.

faces2Q: What inspires you to continue racing for COPD awareness?

A: My main inspiration to keep running to bring awareness to COPD is my dad and the millions of people living with COPD each day. My dad and I have a very close relationship with each other. Every other person with COPD has family that care about them as well. I feel this is the least I could do to honor them the best way I can. On days when the weather isn’t perfect or I’m too tired, I look around and think,  “My life’s not so bad,” which then inspires me to get out the door and go.

Q: What advice do you have for others who would like to take similar action?

A: My advice for anyone who would like to take action is to research as much information you can so you have knowledge of what the disease actually is. I also think whatever you choose to do to make people aware, make sure you give it 110% all the time, even when you think it may not be possible. You can achieve anything if you really want to – it just may take more time.

You can find Justin’s “Run for a Cure” Facebook page here.

Alpha-1 Awareness: #AreYou1?

November 24th, 2014 | Author: Katelyn Turner

At least 100,000 Americans live with Alpha-1 Antitrypsin Deficiency (Alpha-1), but fewer than 10% have been diagnosed. Alpha-1 is the most common known genetic risk factor for emphysema. Are you 1? That is the question the Alpha-1 Foundation is asking YOU for COPD/Alpha-1 Awareness Month.

Take part in the  Alpha-1 activities happening this month!

  • As part of the “I am 1. Are you?” awareness campaign, the Alpha-1 Foundation wants you to record a video of yourself or a loved one and post it on Facebook and/or other social media sites. Make sure to use the hashtag #AreYou1 and include a link to alpha-1foundation.org/awareness.

  • Participate in the Alpha-1 Art Auction! In November 2013, NASCAR drivers showed their artistic side for Alpha-1 Awareness when they created art alongside children living with Alpha-1. Now you have a chance to bid on their creations! Proceeds will benefit the Alpha-1 Foundation’s research programs.

Take a look at the artwork and participate in the auction here.

Spread the word about Alpha-1 by downloading the fact sheets below and sharing with friends and family. Don’t  forget to ask – #AreYou1?

Fact Sheets:

Running with Wings

June 24th, 2014 | Author: Fabiana Talbot

DSC00280

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.

Shaming and Blaming

March 7th, 2014 | Author: Fabiana Talbot

The dreaded question for individuals living with COPD is “Did you smoke?” So much is insinuated in three simple words, and so many in our community have to withstand the stigma associated with the disease.  All too often, people with COPD are afraid to reach out for help, let alone raise awareness for the disease, because they believe in the end they will be shamed and blamed for smoking.

Smoking does cause 75% of COPD – but did you know that 25% of COPD patients have never smoked? Environmental,

(taken from Pinterest.com)

(taken from Pinterest.com)

occupational, and genetic factors also cause respiratory diseases.  If you did or do smoke however, know that you are not alone. If you feel stigmatized for your condition, just reach out to our COPD community on Facebook or call the C.O.P.D. Information Line at 1 866 316 2673. What is important now is not to look at the past with regret and shame, but to the future with strength and hope. No one has the right to take that away from you.

This leads me to a piece of news that broke this week. Online news site, Mail Online, reported that late actress Shirley Temple Black was, “…a secret smoker who died from lung disease.” When she passed last month, her family did not disclose COPD as the cause of death, perhaps out of fear that she might be stigmatized for smoking.

This is just one example of an individual who had to live in silence about a disease that is the third leading cause of death in the United States. We hope those living with COPD today will come out of the shadows and help educate others about the nature of the disease. We believe the “shame and blame” culture will decline over time with greater awareness and education about the disease.

We are proud of all of our community members who speak out about COPD, and have the courage to stand up to those who may judge and marginalize us.

Have you been “shamed and blamed” for developing COPD? How did you deal with it? Please share in the comments section.

 

World COPD Day: November 20, 2013

November 18th, 2013 | Author: Fabiana Talbot

We are just two days away from World COPD DayThe COPD Foundation is supporting the Global Initiative for Chronic Obstructive Lung Disease (GOLD) to help raise global awareness on Nov. 20, 2013.  This is a prime opportunity for our community to come together in an effort to educate the masses about a disease that affects over 200 million individuals worldwide

Here are a few ways to get involved:

1. Tell your online networks about COPD Awareness Month by using #COPDAwareness on your social media pages:

  • Imagine breathing through a straw. That’s what it is like having COPD.  Learn how to protect yourself drive4copd.org. twitter#COPDAwareness
  • COPD kills more women than breast cancer and diabetes combined. Have trouble breathing? Go to drive4copd.org today. #COPDAwareness
  • World COPD Day is 11/20 – do you know about the third leading cause of death in the US? #COPDAwareness
  • Orange is the color of the movement to end COPD. RT if you or someone you know lives with this disease. @DRIVE4COPD #COPDAwareness
  • Repost if you or someone you know lives w/ COPD. Let’s find a cure for a disease that claims a life every 4 mins. #COPDAwareness 

Participate in the COPD Twitter chat on November 19 from 1-2 pm EST. We will be joined by representatives from the American Lung Association, the Centers for Disease Control, and NHLBI’s COPD Learn More Breathe Better campaign.  Use #COPD to join the conversation!

2. Go to DRIVE4COPD.org to join the COPD community and enter the NASCAR “Wave the Green Flag” Sweepstakes. You and a friend may win a trip to the DRIVE4COPD300 race at Daytona International Speedway!

cutout3.  Request a pad of Cure 4 COPD Pinwheel cutouts that can be sold at your office, school, cafeteria, etc. for $1-$5 and hang them with the donor’s name written on it. Pinwheel cutouts covering your wall will not only raise funds needed to work on the cure, but will remind everyone it is COPD Awareness Month.

E-mail FUNdraising@copdfoundation.org to make a request for a free pad of Cure 4 COPD Pinwheel cutouts.

        Visit the COPD ACTION CENTER.  All on one website you can:

  • Become a STATE ADVOCACY CAPTAIN (it’s really easy!)
  • Send pre-written ADVOCACY LETTERS to your representatives
  • Look up CONTACT INFORMATION for your local, state, and national representatives.
  • Sign up to RECEIVE ACTION ALERTS so you know when Congress is dealing with COPD legislation.
  • EMAIL YOUR FRIENDS about the Action Center.
  • FIND LOCAL NEWSPAPERS to write to about COPD.
  • Learn more about COPD LEGISLATION.
  • Learn how to EFFECTIVELY COMMUNICATE with members with tips on scheduling meetings, writing letters, or making phone calls

Go Orange for National COPD Awareness Month!

 

Inspiration For Life: AACVPR Initiates Pulmonary Rehabilitation Week

March 4th, 2013 | Author: Fabiana Talbot

Pulmonary Rehabilitation Week, initiated by the American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR), Read more…

2012 COPD Proclamation Update

December 4th, 2012 | Author: Aimee Bulthuis

The COPD community had a very successful COPD Awareness Month thanks Read more…

DRIVE4COPD at the NASCAR Geico 400 Chicagoland Speedway

September 18th, 2012 | Author: Fabiana Talbot

The DRIVE4COPD campaign is in full effect with a flurry of activities in the works! Read more…

Getting Involved To Honor Her Family

August 17th, 2012 | Author: Katelyn Turner

Robert and Doris Reicherter met in high school, when he was 17 and she was 15. Read more…

A Girl Scout Supports the Cause!

July 30th, 2012 | Author: Fabiana Talbot

You’re never too young to make a difference! Olivia Bernard, Read more…