Meet Your Member of Congress this Summer!

July 17th, 2014 | Author: Aimee Bulthuis

It’s that time of year again—August District Visits! Each August Congress takes its annual recess to return to their districts and meet with constituents, providing us with a great opportunity to raise awareness for Alpha-1 and COPD and start building a relationship with your member of Congress.

This year is unique because it’s a mid-term election year, meaning 1/3 of the Senate and all House of Representative members are up for election. This is a great chance to have your voice heard and help us change our nation’s health policies.

The COPD Foundation will help you in every way we can: scheduling the meeting, locating others to participate with you, providing talking points, mailing you leave behind packages, but we really depend on your involvement to make these meetings a success. To get involved please contact Rebecca Rudolph either by email, rrduolph@copdfoundation.org or by phone 866.731.2673 ext 451.

Steps for Meeting with Your Elected Officials

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.

Could it be COPD?

June 12th, 2014 | Author: COPD Coach

Dear COPD Coach,

I don’t want to waste your time, but my father has been experiencing trouble breathing, coughing spasms, and loss of consciousness due to coughing. I’m scared, I don’t know if he has COPD or not but he’s been to the doctor and all they say is that it’s just his asthma but it’s getting severe. We’re hoping he gets tested but he’s skeptical about doctors. I’m only 14 and I don’t know anything about COPD and I need help please. I don’t know if he even has it but my whole family is scared. Please give me some information on this disease and maybe some tips I can give to my dad to help him breath better. Any help is appreciated, thank you.

-Concerned Son

Dear Concerned Son,

First of all, you are not wasting my time! You have some very valid questions and concerns!
Coughing can be a part of COPD, and might be something called Chronic Bronchitis. Chronic Bronchitis causes a person to have to cough a lot often bring up mucus. Sometimes it is difficult to bring up the mucus because it is too far into the lung or too thick. There are medications and medical devices that can help to clear the lungs more easily.

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(www.thekidsareallright.com.au)

As for the coughing until he loses consciousness: when you cough, you raise the pressure in the chest which then interrupts the blood flow back to the heart and eventually to the brain for a short period of time. The result is that often the person becomes dizzy or passes out. When the coughing stops, the blood flow returns to normal and the brain begins functioning normally. When your dad feels a coughing spasm coming on, he should sit down and breathe as much as he can through the coughing cycle. If he is driving or operating machinery, he should cease the activity until the spasm stops. I know this may sound frightening, but as long as he is sitting or not involved in driving or other activities, he will be fine when the coughing stops.

You are right that he should be tested. He should ask his doctor for a referral to a pulmonary doctor who can help get to the bottom of it. The tests are pretty simple and should be able to tell him if he has COPD or some other condition that might be causing his symptoms.

I assume that since you are only 14, your dad is probably around 45. What you didn’t tell me was if he smokes, or is around chemicals and strong odors or air pollution. All of these can cause breathing problems, and he should avoid all of these if possible! If he has a history of asthma, he has about a 20 percent chance of developing COPD, and there are times when his asthma can become worse. There is also a genetic form of COPD called Alpha-1 Anti-trypsin deficiency (more info on this at www.alphaone.org). The test for Alpha is very simple and be done at home.

More information on COPD is on our website www.copdfoundation.org. Look under the Learn More tab and select Downloads Library.

I am indeed sorry I can’t offer more information, but this is about the best I can do with the information you provided. Until your dad gets tested and the doctors find out what is going on with his breathing, things won’t change for him. If your dad wants to speak with someone about COPD he can call our COPD Information Line at 866-316-2673 from 9 AM to 9 PM (EST). This line is staffed by COPD patients and they can help answer any questions he may have.

Please feel free to reach out any time you have any questions or concerns. It is not often I find someone your age so concerned and interested in finding answers. Your dad is lucky to have you as a son!

Best regards,
The COPD Coach

Ask the Expert is aimed at providing information for individuals with COPD to take to your doctor, and is not in any way intended to be medical advice.

If you would like to submit a question to the Coaches Corner email us at coachescorner@copdfoundation.org. We would love to hear your questions and comments. You can address your emails to any of the following: COPD Coach, Caregiver Coach, COPD Doctor or COPD RT.

COPD Foundation Blog Voted one of Healthline.com’s Best COPD Blogs–Third Year in a Row!

May 27th, 2014 | Author: Katelyn Turner

We are proud to announce that for the THIRD year in a row, our COPD Foundation blog has made Healthline.com’s top COPD blogs list! Additionally, two of our other resources, the DRIVE4COPD and the COPD Digest websites, were also included along with other sites such as one from the National Health, Lung and Blood Institute and HealthCentral.

Our thanks to Healthline.com for the recognition.

From Healthline.com:

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COPD Foundation Blog

“The COPD Foundation has been a leader in patient advocacy for the last decade. They have even worked with the government to promote better detection and care. The COPD Foundation Blog discusses prominent health issues for current COPD patients and their families.

The blog, written by health experts, is informative yet personal. It covers issues such as the potential long-term consequences of the newly popular e-cigarette. And it offers opportunities to ask questions from the ‘COPD Coach.’”

DRIVE4COPD:

Drive 4 COPD is a public health initiative created by the COPD Foundation. Most people don’t know they have the disease, which makes early treatment challenging. Here you can take a short quiz to detect possible risk factors and symptoms.

While this blog strives to promote early COPD detection, it’s also a community for patients and their loved ones. COPD can make everyday activities difficult, which may become isolating. Having a community like Drive 4 COPD can help lift your spirits while connecting you with others battling similar challenges.”

COPD Digest:

COPD Digest is another initiative from the COPD Foundation. It’s a free online magazine that’s also available in print format. Each quarterly issue features the latest COPD news and highlights patient challenges.

COPD Digest has a series called ‘Faces of COPD,’ which includes inspirational profiles of people overcoming seemingly unbeatable obstacles. There’s also a link for easy access to the Foundation’s main blog for daily updates on everything you need to know about COPD.”

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