Posts in the General Category

The COPD Foundation Blog Has a NEW Home!

May 1st, 2015 | Author: Katelyn Turner

As you probably know, the COPD Foundation launched the COPD360social.org networking platform in November 2014. The site is an invaluable resource by serving as a one-stop-shop for COPD: access quality educational materials, participate in research, become an advocate, and connect with new friends. It allows us to meet, chat, collaborate and support one another- and now you can read the Faces of COPD blog posts on COPD360social.org! We want to hear from patients, caregivers, and professionals daily.  Your thoughts, concerns, fears, and inspiration- become a part of our interactive, collaborative community to friends, learn about events in your area,COPD360ourcommunityonline_AAcard chat with the experts, and learn how to take action- all on your time, at your pace. At COPD360social you can:

  • Create a personal profile describing yourself
  • Get to know others with COPD
  • Ask a question
  • Start a discussion
  • Share your story
  • Comment on a blog
  • Access educational materials
  • Find out about COPD events in your area and across the country
  • Find a pulmonary rehabilitation program near you
  • Find a breathing support group near you
  • Make a difference through research
  • Have a voice in policies and laws
  • Be inspired!

There is a lot of information on the internet. Sometimes it can be pretty overwhelming. It can be hard to know what’s true and what’s not, and which are proven treatments and those that don’t have scientific support. With COPD360social you can be confident you are getting quality information from a trusted source. Join COPD360social, because we are stronger when we work together. Visit www.COPD360social.org to create your profile and access future COPD Foundation blog entries.

COPD 9 Patient Education Workshop will Inform, Inspire and Empower Patients!

April 9th, 2015 | Author: Jane Martin

Something very special will be happening in Chicago this June, and you’re invited. The international COPD9USA conference is a unique medical conference where top researchers, health care professionals, and patients, family members and caregivers not only co-exist in the same space, but are encouraged to interact – and even ask tough questions.

COPD advocate Grace Anne Dorney Koppel will facilitate the workshop. Diagnosed with very severe COPD in 2001, she crop continues to live a full, rewarding life in spite of her diagnosis. Internationally-known COPD experts Barbara Yawn, MD, Bartolome Celli, MD, Paul Simonelli, MD, PhD, Keith Robinson, MD, Stephen Rennard, MD, Barry Make, MD, Scott Cerreta, MS, RRT, and Mr. John W. Walsh will talk with the audience about COPD Basics, Over/under Diagnosis-Over/under Treatment of COPD, Individualizing COPD Care and a look at the Past, Present and Future of COPD.

COPD9USA will take place on June 5-6 at the Hyatt Regency O’Hare hotel – 9300 Bryn Mawr Ave Rosemont, IL 60018. Free valet parking is available for patients on a first-registered-first-served basis.

Register today by calling 1-866-316-COPD (2673) or visiting our website.

The COPD Foundation Thanks You

November 27th, 2014 | Author: Katelyn Turner

This Thanksgiving, the COPD Foundation would like to express its gratitude to you, our advocates, for all of your time and effort on spreading awareness of COPD. Your passion and dedication is inspiring and we appreciate all of your hard work over the years.

As 2014 comes to a close, we look forward to the latter part of our 10th Anniversary. We began our journey in May pinwheel thanks2004, with a small team of individuals who were committed to bringing effective change to a widely misunderstood, ignored, and stigmatized disease-state. We formed the Foundation with the goal of preventing and curing chronic obstructive pulmonary disease, and to improve the lives of all people affected by this devastating disease.

2014 was a transformational year for the COPD Foundation and a time of many firsts for the international COPD community.

We look forward to seeing these research, educational, and advocacy opportunities grow and thrive to ultimately form a COPD movement that will bring our silent epidemic to the forefront.

Happy Thanksgiving!

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:

The Portable Oxygen Concentrator Dilemma

November 21st, 2014 | Author: Katelyn Turner

This opinion piece was written and submitted by COPD community member, Tony St. Amant of Chico, California.

The other day I received an email announcing a portable oxygen concentrator (POC) weighing less than two pounds with a battery life of three hours, and even longer with supplemental batteries. Wow! A two pound oxygen source that could operate for three hours or more! Absolutely dazzling to anyone who has been tethered by supplemental oxygen for any length of time–except, the devil is in the details.

I scanned the manufacturer’s product webpage to find out how much oxygen this little dynamo can provide, but it’s not there. There is only an indirect reference to a “2 pulse setting.” What in heaven’s name does that mean? Is it a shadowy implication that this little baby can output 2 liters per minute (LPM)? If not, what does the “2” mean? I need to know, so I start digging through the support literature. The cut sheet is no help. It contains substantially the same info as the web page.

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Finally, I find the Patient Manual—you know, the document you normally read after the unit is bought, paid for, and delivered. And there it is, on page 30 of the 40 page manual, almost an answer. Each pulse delivers 17.25 milliliters (ml) ± 10%. But, unlike most pulse dose specifications I’ve seen over the years, this one doesn’t specify a respiration rate. Will it deliver that pulse dose at 10 breaths a minute, 15, 20, more? There can be a world of difference in the unit’s therapeutic value.

So let’s take a look at what I will call best case oxygen output. Let’s assume the machine is operating at the upper boundary of output: 17.25ml + 10%. That would be 18.975ml per pulse. If it will provide that output at a fairly normal resting rate of 15 breaths per minute, its total output would be about 285ml per minute or about .3 liters per minute. If it will provide that output at a somewhat elevated respiration rate of 20 breaths per minute, its total output would be about 380ml per minute or about .38 liters per minute. But who knows? That information is not disclosed. And what’s the real value of a two-pound $2,000+ POC that might be insufficient under mild exertion?

Of course, it’s not as simple as that. A person who has a prescription for 2 LPM continuous doesn’t actually inhale two liters of output from any oxygen source. The actual amount inhaled is dependent on respiration rate and other factors. But there is no industry or government standard for comparing pulse to continuous flows. Additionally, a POC that delivers a nominal continuous flow of 2 LPM doesn’t actually deliver 2 LPM of oxygen. For POCs, oxygen is normally somewhere between 87 and 95 percent of the flow. Therefore, the oxygen delivered at 2 LPM continuous flow is typically between 1.74 and 1.9 LPM.

So if you have an oxygen prescription for as little as 2 LPM, will this hyped up pulse-flow mini-POC meet that requirement? It’s not clear at all that it will, nor is the real pulse flow equivalency clear for any other POC. And even if the POC will deliver 2 LPM of oxygen at rest, will it deliver it at an elevated respiration rate during physical activity? The only information available to the potential POC buyer is that published by each manufacturer, with no assurance that the basis for the information is consistent between manufacturers.

If “buyer beware” ever applied to any market, it applies to the POC market. If you’re shopping for a POC, good luck. Please hope with me that the U.S. Food and Drug Administration or the industry will come up with standards that will help individuals with COPD accurately match their needs with POC oxygen output.

-Tony St. Amant
Chico, CA

COPD Awareness Month – Still Going Strong

November 20th, 2014 | Author: Katelyn Turner

It has been a busy month for us at the COPD Foundation. As you probably know, November is National COPD/Alpha-1 Awareness Month! How have you been raising awareness of COPD to your friends, family, and community?

We still have more than a week of COPD Awareness Month left! Don’t forget to wear ORANGE, the official color of COPD, and take part in COPD Foundation activities: COPD360ourcommunityonline_AAcard

Use #Tell10 to encourage your friends and family to tell at least 10 people every day about this devastating disease.
#Tell10 people about COPD every day for COPD Awareness Month. Strength in numbers: because we are stronger when we work together.

Our Veterans: an At-Risk Population for COPD

November 11th, 2014 | Author: Katelyn Turner

Happy Veterans Day from the COPD Foundation!

We are deeply grateful to those who have sacrified for our country to protect and uphold American ideals and freedom. We honor all military veterans today and extend a heartfelt “Thank You” for their service.

Did you know veterans face a higher risk of developing COPD?

You might be surprised to learn that:

  • Veterans are 3x more likely to develop COPD than the civilian populationimages-of-veterans-day
  • COPD is the fifth most prevalent disease in the veteran population
  • COPD affects approximately 15% of Department of Veterans Affairs healthcare users

In the article, “Fighting for Air: Veterans Face Higher Risk for Developing Lung Diseases,” the author, COPD Foundation president John W. Walsh, states that COPD is a growing health concern for military veterans. He says that some soldiers have faced, “… a barrage of respiratory exposure,” such as:

  • Smoke from burn pits
  • Aerosolized metals and chemicals
  • Outdoor aeroallergens like date pollen
  • Indoor aeroallergens like mold aspergillus

With these environmental hazards in mind, we urge veterans who are symptomatic of COPD to get an annual “spirometry” or breathing test.

We want to help those who have given up so much for us, and hope all veterans will take action during November’s COPD Awareness Month by getting screened for COPD.

Pam DeNardo: A Decade of Helping Individuals with COPD

August 11th, 2014 | Author: Fabiana Talbot

This excerpt was drawn from the Spring 2014 issue of the COPD Digest.

When Pam DeNardo was diagnosed with COPD in 1999, there were scant resources available. She had to do her own research—teaching herself about medications, inhalers, and pulmonary rehabilitation, a task she said was daunting and scary without guidance or any references.

“I was terrified. Mpamdenardoy doctor said that at best I had three to five years to live,” DeNardo says. “’Incurable’— that’s all I could think of. Except, I couldn’t die. I was a single mother of two, I had a mother in her 90s who needed me, and a small insurance business that had just turned the corner and was making money. I simply could not be sick, and I could not die.”

Today, DeNardo is one of 35 associates who work on the COPD Foundation’s C.O.P.D. Information Line. When it was created in 2007, they averaged 300 inbound calls every month. Today, the associates field anywhere between 5,000-6,000 contacts each month. DeNardo was one of the driving forces behind the creation of the Information Line.

“Today, patients are still scared. You can hear that when they call the Info Line. The best thing is when I get a call from a newly diagnosed patient, because I can tell them I’ve had the diagnosis for 15 years, and you can hear the relief in their voices,” she says. “The Information Line, to me, is the culmination of everything I believed in.”

phoneIn 2007, she met with Bill Clark, director of outreach programs at the COPD Foundation, and John and Diane Walsh, and together, they recruited patients, set up the toll-free line for support and information, and the Information Line was born.

“The Foundation will continue to grow, and I believe it [a cure] will happen. And I hope to be there. I’m working hard to be there,” DeNardo says.

Read on about Pam’s journey on the COPD Digest website.

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.