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A Dedication to Resourceful Living: A group approach to focus on what matters to the members of our community whose lives are impacted by chronic lung disease.

Breath Matters Virginia Lung Support Group

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OCTOBER 13, 2014

Speaker: DR. LORI SWEENEY

“Your Thyroid and COPD”

Lori Sweeney

More Information Coming - Please Check Back

Chippenham Medical Center
7101 Jahnke Road
Richmond, VA 23225


THE SEPT 2014 MEETING: JANET PINSON, NP

(Nurse Pract.) & Attendee, Pulmonology Department, MCV Hospital, Richmond, VA

TOPIC: "THE NEW COPD MEDS"

Janet Pinson NP - Meeting Breathmatters Sept 2014 1

The September 8, 2014 meeting was very well attended, we had a packed room to hear NP Janet Pinson.

Janet Pinson, NP, MCV Hospital Richmond Virginia Video taped at the Sept 2014 Breathmatters suport group meeting for lung disease sufferers at the Bosher Auditorium in Chippenham Medical Center, Richmond Virginia.

Discussed were the keys to Pulmonary Rehab Success, and the importance of exercise, in particular arm exercise.

WATCH THE ONLINE VIDEO RECORDED AT THE SEPT MEETING

Discussed were the new inhalers, such as:
  1. Combinent Respimat
  2. Tudorza Pressair
  3. Breo Ellipta
  4. Anora Ellipta
  5. Arcapta Neohaler
  6. Striverdi Respimat
  7. Spiriva Respimat

Janet Pinson NP - Meeting Breathmatters Sept 2014 2

Janet Pinson NP - Meeting Breathmatters Sept 2014 3

Janet Pinson NP - Meeting Breathmatters Sept 2014 4

Janet Pinson NP - Meeting Breathmatters Sept 2014 5


FOCUS GROUP - HELP BREATH MATTERS
Debbie LeidheiserJuly 2014 Meeting

Debbie Leidheiser spoke

Senior Advocate, Chesterfield County Virginia

TOPIC: Seeing Through the FOG of Senior Resources

The July 2014 meeting was held at Bosher Auditorium with a good crowd for a day that had intense July heat in the Richmond area. Ms. Leidheiser talked about the explosive growth of people aged 50 and older in the Richmond metro area, and how this growth is expected to increase as more people come to live in the Richmond area. Described in the presentation are the many programs and resources available for seniors.

The Richmond Virginia metro area is considered a highly desirable place for retirement and the infrastructure to support this population has increased considerably. Ms. Leidheiser describes the many tools available for better living for seniors in our area.

Read more about the July 2014 Meeting

SEE THE ONLINE VIDEO RECORDING OF THE JULY 2014 MEETING


Important news on Idiopathic Pulmonary Fibrosis

This note came into Breath Matters March 2014:

Russell, I have some news about idiopathic pulmonary fibrosis, and I'm hoping that you could distribute it to your group at Breath Matters.

Intermune is holding a press conference today that will show positive results from the most recent pirfenidone study. This will likely make it the first FDA approved treatment for idiopathic pulmonary fibrosis.

They will take their information to the FDA later this year, and the medication may be available by the end of 2014. For those in the group with idiopathic pulmonary fibrosis, we are participating in an "open access and early availability" study that will help Intermune with additional safety and tolerability data.

More importantly, it will give patients with IPF access to pirfenidone before it becomes FDA available. There is no placebo arm, everyone will get the medication who qualifies.

If anyone is interested, the study coordinator is Amy Frayser (804-828-7966). Thanks, Dan Grinnan


Action Changes ThingsPulmonary Fibrosis Study

The Participation Program for Pulmonary Fibrosis (P3F) are currently recruiting pulmonary fibrosis patients (fibrosis of any etiology, not just IPF) to sign up for a Contact Registry as well as for a study in which we will examine the effects of daytime supplemental oxygen on a number of outcomes.

For our supplemental oxygen study, we are looking to enroll patients currently using supplemental oxygen and those likely to need supplemental oxygen in the next year or so.

We are asking for your help only to spread the word about this study to all the members of your support group. All data collection will occur either online or via mailings.

Packets containing a more detailed explanation of the study along with recruitment materials (e.g., flyers, business cards) are being mailed to you and should reach you in a few days.

We appreciate your time and attention, and we hope that you can help us by letting the members of your pulmonary fibrosis support network know about these exciting opportunities.

If you would like more information about the P3F, please check us out at www.PFresearch.org and follow us on Twitter at @DoctorSwig or email our Principal Investigator, Dr. Swigris, directly at swigrisj@njc.org.

P P P P F Study


BLOODWORK IN YOUR HOME!

MEDALABS - are you homebound?
Medalabs of VA can come to your home to perform bloodwork and more! Results to your doctor quickly!

See a youtube online video that discusses Medalabs in the Richmond area.

DONATE NOW

Every Breath Counts

This new film about IPF looks at the lives of sufferers and the treatments that are being developed to combat the disease.

www.Everybreathcountsfilm.com

CHIPPENHAM MEDICAL CENTER

OCTOBER 13 - 1:30PM to 3:00 PM

This film will be shown in it's entirety on the Discovery Channel on Sept 13th and 27th at 8 A.M.

THANK YOU TO FASTCAP

Pocket Mask

MXV Pocket Dust Mask

FastCap has donated 100 masks to BreathMatters. We are selling them for $3.00 which is FastCap’s retail. Pick one up at our next monthly meeting!

MORE INFO AT fastcap.com

Finding Hope in Hospice

IPF WORLD WEEK

LEARN MORE AT
THE IPF WEBSITE

ipfworld.org

SUBSCRIBE TO OUR FREE NEWSLETTER! EMAIL SIGNUP

Amazing Raise

You Tube Videos Breathmatters Meetings

Using an Inhaler Online Video

WHY WE NEED YOU TO CONTACT YOUR CONGRESSPERSON

PF is a relentlessly progressive, ultimately fatal disease that affects the lungs, gradually robbing an individual of their ability to breathe. In the U.S. more than 200,000 people are living with PF; 48,000 individuals are diagnosed with PF annually; and as many as 40,000 die annually (1 every 13 minutes). Public awareness of the disease remains very low; there is no FDA approved treatment or cure for the most common form of PF, idiopathic pulmonary fibrosis (IPF); and there is no national PF surveillance registry to collect data and which is critical to developing successful therapies.

THE GOAL

PFREA Creates a National PF Surveillance Registry A registry would improve data collection and information sharing. This should enable research to move forward more expeditiously. The bills contain a provision for the creation of an Advisory Board of governmental agencies, patients and patient advocates, clinical experts and scientists, and others with expertise in PF. The Advisory Board will be responsible for developing the Registry. The Registry will expand upon existing data and will be made available to the NIH and the Department of Veterans Affairs. It will include relevant data, such as incidence and prevalence, environmental and occupational factors, individual demographics, and other relevant information.

WRITE CONGRESS

Virginia Easy Access

For seniors and adults with disabilities and the providers that support them

TRANSPORTATION FINANCIAL
HOUSING

Virginia Easy Access is the name of a website developed for seniors, adults with disabilities, their caregivers and the providers that support them. Virginia Easy Access is full of helpful information about services and supports that are available across the Commonwealth.

Website: Virginia Easy Access

Questions?

Call the Facilitator!

Russell Glover
(804) 378.0628
russellglover@
verizon.net

Stop Smoking Today Online!

Contact Susan J. Keen,
RN, OCN at
CJW Med Center

email: Susan.Keen [at] hcahealthcare.com

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BREATH MATTERS IS SPONSORED BY

INTERMUNE


OUR SPONSORS

Chippenham Hospital of CJW is our largest supporter

Lincare, Rachele Clement, Representative


Contact Breath Matters

Breath Matters - C/o Russell Glover, President - 11520 Edenberry Drive - Richmond, VA 23236-4030
804.378.0628

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