National Jewish Health Is Looking For Participants In A New Pulmonary Fibrosis Study

The Participation Program for Pulmonary Fibrosis (P₃F) in association with National Jewish Health are looking for participants in a new study.

Study Title: Determining the effects of supplemental oxygen on outcomes meaningful to patients with pulmonary fibrosis

Why

Oxygen Tank Todd Huffman FLKR CC

Oxygen Tank — Todd Huffman — FLKR CC

The medical field knows very little about whether and how supplemental oxygen affects patients with PF and their loved ones.

The P₃F team (of patients, physicians, patient advocacy group representatives, PF support group leaders and others) wants to change this.

What

A real-world study of the effects of supplemental oxygen on outcomes meaningful to patients with pulmonary fibrosis (PF)

By joining the P₃F team, you can help move the PF field forward by participating in this innovative research study!

  • No travel required – not even to your doctor’s office
  • Sign up is simple – just contact our study personnel to get started (click here for our contact information)
  • You do not need a computer to participate but it helps if you have access to one with internet capabilities
  • There is no cost to you or your insurance

Main objective

The main objective of this study is to find out whether supplemental oxygen makes people with PF feel and function better. To do this, we need to know how PF patients feel and function before going on supplemental oxygen and then after going on supplemental oxygen.

Who is conducting the study?

The P₃F which includes investigators at National Jewish Health in Denver, Colorado are leading this research study.

Who can participate?

  • Anyone with PF
    • Regardless of cause
    • Aged 18-105 years
    • Who speaks English
    • And meets certain requirements based on prior breathing tests
  • Any 18-105 year-old English-speaking primary supporter of a PF patient (i.e. spouse, child, friend, etc.)
  • Any English-speaking physician who prescribes oxygen to a PF patient

What happens after I enroll?

  • You may be asked to participate in one or more parts of the study
  • Regardless of how you participate, you will be given a unique identifier, so we don’t have to use your name (or other private information) and can keep identifying information private
  1. If you use supplemental oxygen during the day (all the time or just with exertion), the extent of your participation will be one, 30-minute telephone interview and filling out a one-time quality of life questionnaire
  2. If you do not use supplemental oxygen at all during the day, we will collect data from you at four time-points

        a) At time of enrollment
b) Immediately before oxygen is prescribed for use during the day
c) 1 month after oxygen is prescribed for use during the day
d) 9-12 months later

What kinds of data are collected at the four time points (a, b, c and d)?

  • Four questionnaires that ask about symptoms and quality of life
  • You will be asked to wear an activity monitor on your arm for 7 days
  • You will be asked to wear a GPS monitor on your clothing for 7 days
  • The first 40 subjects who are interested will be interviewed for 30 minutes over the phone

How are the data collected?

  • Questionnaires can be filled out online, or paper versions can be mailed to you
  • The activity monitor and GPS unit are mailed to you
  • Interviews are conducted over the phone with study personnel

There is NO cost to you!

  • Telephone interviews are conducted via the P₃F toll-free phone line
  • All mailings are paid for by the study
  • Patients use pre-addressed, postage-paid envelopes to return equipment

How will you know if I my doctor wants me to start using oxygen during the day?

  • The short answer is we will stay in touch with you:
  • You will be asked to fill out a simple, 10-minute questionnaire once a month
  • You will let us know when you have appointments with your doctors
  • You will contact us if your doctor wants you to start using oxygen during the day
  • We will provide you with an informational packet to bring to your doctor visits to remind both you and your doctor about the requirements of the study

My doctor wants me to start using oxygen during the day. What now?

We are assuming the need for oxygen has come on gradually and not because something acute has occurred. If this is the case, then we will make sure your doctor is still okay with you waiting to start using supplemental oxygen until after we collect some data from you over the next 7-10 days.  We will also collect data one month after you start oxygen and finally 9-12 months after you start oxygen.

Interested? Let us know!

 

The Second Wind Foundation For Pulmonary Fibrosis Proudly Announces The “Breathe Easy” Program To Help Families Suffering From Pulmonary Fibrosis

For Immediate Release

The Second Wind Foundation For Pulmonary Fibrosis Proudly Announces The “Breathe Easy” Program To Help Families Suffering From Pulmonary Fibrosis 

The Second Wind Foundation to provide gas cards to families who are suffering from Pulmonary Fibrosis.

Filling Gas Tank (KOMUnews CC Flikr)Auburn, NH – The Second Wind Foundation for Pulmonary Fibrosis proudly announces the start of a new program designed to help families who are suffering from Pulmonary Fibrosis.

Pulmonary Fibrosis is a rare lung disease that creates scar tissue inside the lungs, making it harder and harder to breathe.   Pulmonary Fibrosis currently effects more than 500,000 people in the US.  After being diagnosed with Pulmonary Fibrosis, patients must meet with their doctors regularly to monitor their condition.  The increase in doctor visits, home healthcare, and oxygen tanks put a significant financial strain on patients and their families.

Ron and Marylou Geoffroy started the Second Wind Foundation for Pulmonary Fibrosis, after Marylou was diagnosed with Pulmonary Fibrosis.

“As Marylou’s condition deteriorated, we were traveling to Boston for doctors appointments a few times a month,” said Ron Geoffroy President of the Second Wind Foundation for Pulmonary Fibrosis. “This is exactly why we started the ‘Breathe Easy’ program, to give some monetary support to families suffering from Pulmonary Fibrosis.”

To help families deal with the financial strains that a chronic disease can have, the Second Wind Foundation for Pulmonary Fibrosis created the Breathe Easy program to provide $50 gas cards to qualified recipients.

The Breathe Easy program is open to anyone who suffers from Pulmonary Fibrosis or for those who are caring for someone with PF.  The Breathe Easy application can be downloaded at http://secondwindforpf.com/breathe-easy-program/.

Right now there is no cure for Pulmonary Fibrosis, and thanks to donations from the Second Wind Foundation for Pulmonary Fibrosis, new research is helping to find a cure.

To help raise money for this new program the Second Wind Foundation is hosting a charity motorcycle ride this September. The “Give A Gift Of Breath” motorcycle ride will be held on September 13th 2014 and begins at the Plumbers and Pipefitters Hall, 161 Londonderry Turnpike, Hooksett, NH.

Enjoy a scenic ride through the tree-lined roads of central New Hampshire, and then enjoy some great food courtesy of the Puritan Back Room.

Registration for the ride begins at 8:00 am with kickstands up at 10:30 a.m.  The cost is only $25 per bike and $10 for additional riders.

“The Give a Gift of Breath motorcycle ride is one of our biggest annual fundraisers for the Second Wind Foundation,” said Geoffroy. “To encourage people to sign up early for the ride, we are offering a $5 discount if you register now.”

For more information about the Second Wind Foundation for Pulmonary Fibrosis, and to register for our upcoming ride, go to http://secondwindforpf.com/.

The Second Wind Foundation For Pulmonary Fibrosis Announces “Breathe Easy” Program To Support Families With PF

A program of Support for Families
From The Second Wind Foundation for Pulmonary Fibrosis

The program is designed to provide support for families affected by Pulmonary Fibrosis.  It’s understood that the program is not all encompassing, however with additional resources the organization can continue to expand the program to include other aspects of assistance.

As an introduction to the program, initially we will provide a $50 gas gift card to each viable applicant that requests assistance through the application process.  Applications will be submitted to a 3-person subcommittee who will review all applications for their viability.

The following will be, but not limited to,  items of information that will be necessary for the subcommittee to approve patients for the program.  This information is to be completed by the applicant or caregiver.  It may be necessary for the Second Wind Foundation to contact applicants to request additional information.  Submittal of the application is approval for the organization to contact you.

Click here to download an application

More information on the program can be found here, or by clicking the Breathe Easy tab in the top menu bar.

Carol’s Story Of Living With Pulmonary Fibrosis: It All Started With Trouble Breathing

Quilting (Image by Gina Pina)

One of Carol’s favorite activities is quilting.
Image by Gina Pina FLIKR

Carol is a 65 year old female, who has never smoked, has no family history of any lung disease, has never had any type of ailments relating to lungs, and did not have any breathing issues prior to 2013. In May of 2013, she found herself having difficulty breathing when climbing stairs. She made an appointment to see her doctor. The doctor suggested the cause could be lung related. A chest x-ray was the first step in the diagnosis.

After reviewing the chest x-ray, the doctor recommended that she see a pulmonologist. The pulmonologist put Carol through a regiment of tests, CT, EKG and a Pulmonary Function Test (PFT). After all these test the pulmonologist diagnosed Interstitial Pulmonary Fibrosis (IPF). Carol and her husband were shocked. Carol had never smoked, never worked in any environment that would have caused an injury to her lungs, and never had any type of lung issues at all.

What we do know about IPF is that there is no root cause to this disease. As with many of the people that have IPF, there is no one factor that stands out among IPF patients. Some IPF patients have a history of having been in potentially toxic conditions that could cause an injury to the lungs, yet others like Carol, have never even been sick with any lung type illnesses. This is the very difficult part of understanding Pulmonary Fibrosis.

The pulmonologist suggested Carol undergo a lung biopsy to confirm the diagnosis. She and her husband had a trip planned within the upcoming weeks. They felt as though they should go on the trip and wait for Carol to have the biopsy when they returned. In June of 2013 Carol underwent the biopsy and it did confirm that she had Interstitial Pulmonary Fibrosis.

In the past year Carol has been very aware of her disease. As it has impacted her life she has made changes where needed. Carol has learned to do many of the same things she did before, however taking a bit more time so that she can maintain an adequate level of breathing. She is very active with grandchildren, exercising, and involved in the community.

Recently, Carol has felt as though the fibrosis is progressing. During one of her pulmonary rehab sessions, her oxygen levels dropped a bit which concerned the specialist. Her pulmonologist suggested that it may be time for her begin the use of oxygen when she is exerting herself. She will be undergoing another PFT, which will help to determine if there is a need for supplemental oxygen and if so what level of oxygen she would need during exercise.

As with many IPF patients, Carol, seems to be understanding of her condition and is weighing all the options. She continues with life’s daily activities, enjoying her grandchildren, and takes one day at a time.

The Second Wind Foundation would like to thank Carol and her family for agreeing to provide us with her story. We urge others to help spread their story about Pulmonary Fibrosis. If you’re interested in helping our organization help others understand this disease, please contact us at info@secondwindforpf.com.

For Bruce An Interstitial Pulmonary Fibrosis Diagnosis Is Not Holding Him Back Yet

Image of Mount Monadnock by Ed Holen

Image of Mount Monadnock by Ed Holen

Bruce is a 67 year old man, who was diagnosed with Interstitial Pulmonary Fibrosis in 2012.  In 2008 Bruce found that he was having difficulty breathing during hikes that he took while working at one of his favorite hobbies, Geocaching.  If your not familiar with Geocaching, Google the term and you will see that being part of this fun, family friendly hobby relies on some physical ability.  Bruce has been doing this for over 11 years.  In 2009 Bruce went to a doctor and they performed a Pulmonary Function test.  The test showed some oxygen deficiency during exertion.  The doctor he was seeing at the time diagnosed Restrictive Lung Disease.  Restrictive and Obstructive lung disease is when you cannot either completely inhale or exhale the air from your lungs, thereby feeling short of breath.  The doctor provided him with an inhaler and suggested that would help.  It didn’t help Bruce at all.

Bruce told us about his various work life.  Bruce spent 2 years in the Navy as a welder and sheet metal worker and 11 years in the Navy Reserve. Also worked in the NH Air National Guard for another 9 years as an Air Frame repair technition. While in the Navy he experienced some type of gas poisoning from welding galvanized metals.  He was told the condition would go away and he spent a week recovering.  After the Navy, Bruce worked in the Sylvania plant here in Manchester NH, making light bulbs where he had to deal with many chemicals and gases such as silica and mercury.  After Sylvania he worked for the Elliot hospital as a HVAC technician.  Each of these jobs had some type of influence on him breathing in various gases.  This may or may not have had an impact on his disease.  There is no known cause for PF, and there are numerous and various conditions, both physical and mechanical, that possibly could have an influence in developing PF.

In 2012 Bruce reported for his yearly physical during which his doctor again suggested additional pulmonary function testing.  After his test, the pulmonologist suggested Bruce get a lung biopsy to further determine what was going on.  The biopsy results were positive for Interstitial Pulmonary Fibrosis. The physician suggested to Bruce that he get his affairs in order because he only had 3-5 years to live.  Bruce was devastated.  How could a doctor say that to someone?  Bruce went and found another doctor in the fall of 2013.  At that point Bruce was having difficulty breathing during exertion.  As you remember Bruce is a Geocaching participant and regularly has to hike to locations to find his Cache.  Bruce was finding that he was slowing down and seemed to need to stop regularly to catch his breath.  His doctor recommended that he start using oxygen during exercise to supplement his breathing.  He is presently using 3 liters during his hikes or when out in the yard doing work.

Bruce has also tried some clinical drug trials to determine if they would help.  He applied for the Ascend Trial for Pirfenidone, (click here to find out more about Pirfenidone) and the Gilead GS-6624 Trial. Both of which didn’t work out as his condition didn’t meet there needs for the trial. Bruce has recently completed an application for another clinical trial, Nintedanib, that is hoping for FDA approval.  Bruce feels that being involved in the clinical trials to determine if it would help him have a better quality of life or help to reverse or slow the progression of his condition, is something he wants to do for himself and other PF patients.

Having PF is significantly life changing to anyone but Bruce says that it has changed his life some but not slowed him down too much.  He continues his Geocaching and enjoys his time with his family and traveling.

The Second Wind Foundation would like to thank Bruce and his family for providing his story.  We urge others to help spread the word about what they live through in dealing with Pulmonary Fibrosis.  If you’re interested in telling you story to share your experience with others, please contact us at info@secondwindforpf.com.

The Second Wind Foundation To Sell “Doves” At Local Shops To Bring Awareness To Pulmonary Fibrosis

SWDove CropDuring the week of May 10th -17th, the Second Wind Foundation for Pulmonary Fibrosis will be working with businesses in the Manchester and Auburn area to bring awareness to the rare and debilitating disease known as Pulmonary Fibrosis.

This is the second annual “Second Wind for Pulmonary Fibrosis Awareness Week,” and we hope to double our fundraising efforts from last years event.

Pulmonary Fibrosis is a rare lung disease that creates scar tissue inside the lungs, making it harder and harder to breath.  One of our main goals of the Second Wind Foundation is to education the public about this disease by raising money to help with awareness, research and support families suffering from Pulmonary Fibrosis.

Local businesses will be selling paper “Doves” for $1.00 and then will post your name and your message of support for everyone to see.   Our hope is that walls of these local shops will be covered with doves, showing strong support for those who suffer from Pulmonary Fibrosis.

Local shops and restaurants will be posting the below flyer on their door.  (If you have a business in Manchester’s Ward 6 or in Auburn and would like to take part in our event, contact Ron Geoffroy at Info@SecondWindforPF.com.)

Look for these signs and help support the Second Wind Foundation for Pulmonary Fibrosis.    We will be updating this post as local businesses agree to take part in the event.

dove event FINAL PNG

Please help us in finding a cure for Pulmonary Fibrosis by purchasing a dove any time you enter these businesses

 Businesses Currently participating on the Dove Event:

Zoey’s Pizza – 2160 Candia Rd., Manchester

MacPherson Hair Salon – 7 Raymond Rd., Auburn

D’s Hair Design – 747 Hooksett Rd., Auburn

Louko’mammas – 15 Chester Rd., Auburn

Candia Rd. Auto – 220 Candia Rd., Manchester.

Granite State Collision – 71 Sinclair Ave., Manchester

Revive Salon – 1.5 East Broadway Rd., Derry

Namaste School – 535 Mast Rd., Goffstown

Acme Glass – 87 Priscilla Lane, Auburn

Hair Game, 425 Candia Rd. Manchester.

Auburn Supermarket, 6 Chester Rd, Auburn

Turnpike Pizza,  903 Londonderry Turnpike, Auburn

Manchester Auto Glass, 1224 Hanover St., Manchester

Sandy’s Variety, 2281 Candia Rd., Manchester

Lakeside Lanes, 2171 Candia Rd., Manchester

 

Honoring Mary Lou By Continuing Her Work With The Second Wind Foundation (by Jessica Clark)

IMG_2124

Mary Lou Geoffroy
in Nov 2010

I never heard about pulmonary fibrosis until I learned that Mary Lou Geoffroy was diagnosed with the disease.   Mary Lou would become one of the approximately 200,000 people who are diagnosed with the disease.  IPF is a condition in which over a period of time the lung tissue becomes thickened, stiff, and scarred. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and thicker, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don’t get the oxygen they need. In some cases, doctors can determine the cause of the fibrosis, but in most cases, there is not a known cause. When there is no known etiology for the fibrosis (and certain pathologic criteria are met) the disease is called idiopathic pulmonary fibrosis or IPF (Second Wind Foundation for PF).  I did not know Mary Lou very well when she first learned that she had pulmonary fibrosis. At the time I was her husband’s co-worker and  I would come to know her better as her disease progressed.    

During that time I had the privilege of witnessing the birth of the Second Wind Foundation for Pulmonary Fibrosis as Ron and Mary Lou Geoffroy worked hard to create a valuable resource for others who have been diagnosed with pulmonary fibrosis.  I loved listening to her brainstorm ideas on how to share with others the good work of the Foundation.  Her passion led me to enthusiastically become a member of the board.

Jess Clark Sec

Jessica Clark
Secretery of the
Second Wind Foundation

I serve on the board of the foundation to help in a small way continue the good work Mary Lou started. She and her family are an inspiration for me and have taught me a great deal about strength and helping others even during times of adversity.  Although I miss Mary Lou’s feisty spirit I couldn’t find a better way to honor her than to give back and support the work of the Foundation. 

I believe we can find a cure but we need your help.  I hope that you will take action and “give a gift of breath” today by discovering how you can contribute to finding a cure. A few ways you can help support our work is by sharing your story or your family’s story about pulmonary fibrosis, like us on Facebook, sign up for our newsletter, join us at an upcoming event or make contribution to help us continue our work.

  *            *             *              *              *             *

Use this PayPal button to make a tax deductible donation to the Second Wind Foundation right now.   You donation will go to helping other families suffering with pulmonary fibrosis, raising awareness of this fatal disease, and helping to fund new research in an effort to find out what causes PF to finally find a cure. 

Nearly 200 People Attend Second Wind Foundation Charity Hockey Event

Second Wind Members Hold Flag at MonarchsThe Second Wind Foundation for Pulmonary Fibrosis is pleased to announce that we raised more the $2000 for our Manchester Monarchs Hockey Night.

Here is our press release:

Nearly 200 People Join The Second Wind Foundation For Charity Night With The Manchester Monarchs

Manchester, NH: Tonight nearly 200 people came out to support the Second Wind Foundation For Pulmonary Fibrosis by joining us at the Manchester Monarchs hockey game.  The annual charity fundraiser brings in much needed funds to help support families suffering from Pulmonary Fibrosis. 

Pulmonary Fibrosis is a rare lung disease that creates scar tissue inside the lungs, making it harder and harder to breath. Right now there is no cure for Pulmonary Fibrosis, and thanks to donations from the Second Wind Foundation, new research is helping to find a cure.  Pulmonary Fibrosis effects 500,000 people throughout the United States. 

 Ron and Marylou Geoffroy started the Second Wind Foundation, after Marylou was diagnosed with Pulmonary Fibrosis. They started the foundation to help raise awareness to a relatively unknown disease, and to help raise money for research. 

“I am very grateful to all the people who came out to support the Second Wind Foundation tonight,” said Ron Geoffroy, President of the Second Wind Foundation for Pulmonary Fibrosis. “Thanks to their generous support, and continued donations, we will continue to help people who are suffering from Pulmonary Fibrosis.”

 A select group of attendees were honored to hold the flag durning the singing of our national anthem. 

We want to thank all of the people who purchased ticket for our event. Without you we would not be able to provide help in finding a cure and assist families affect by PF. I would also like to give a shout out too all of the people who stopped by our table to talk to us about the disease. Our primary purpose is to spread the word about Pulmonary Fibrosis, and we can consider last night a huge stride in being successful in make many more of you aware.

For those of you who did not have a chance to be with us, you can still help out with a purchase of T-shirts, bracelets or a magnet for you car, which will also help us with our mission, by going to: http://secondwindforpf.com/second-wind-sale-items/

Or you may provide a donation at here

Keep your eyes open for our next event.

Thanks

Ron Geoffroy Sr.
President 
Second Wind Foundation for Pulmonary Fibrosis

Jackie Levine: What It Means To A Part Of The Second Wind Foundation

Jackie-Levine-Tres-1024x682I first heard of Pulmonary Fibrosis in March of 2012 when I meet the President of the Second Wind Foundation, Ron Geoffroy.  After talking with Ron about what his wife had endured during her time with Pulmonary Fibrosis, I became more understanding of PF.  As I continued to learn about Pulmonary Fibrosis and its debilitating affects on people, as well as the impact on the family member’s, I realized I needed to become more involved.  At that time I was attending the fundraisers to help spread awareness and help support research for PF and asked how can I become part of the board?

I attended my first board meeting in late 2012. This is my first experience of this kind. I have learned much from my fellow board members not only about Pulmonary Fibrosis but what it is like to work with very dedicated and caring individuals. Since then I have taken on the position of treasurer.  Being part of such a selfless opportunity has brought me great personal satisfaction and has made me realize how helping and raising needed money to help with research and awareness can be a great personal gift, as well as a gift to so many in need. 

I cannot express the gratitude I feel being a part of this great organization. I will continue to do whatever is needed to support this worthy cause.           

 

A True Story Of A Love Lost To Pulmonary Fibrosis

Mary Lou at Charley's excellent

Mary Lou Geoffroy

One of the most devastating events in anyone’s life is when you receive news from your doctor that you have a disease, and you don’t even know what the disease is.  In 2009 my wife Mary Lou received that news.  Pulmonary Fibrosis.  A disease created by scarring in your lungs which blocks the ability of the aveoli in your lungs to process oxygen into your bloodstream.  Oxygen is the life sustaining substance in every single breath we take as humans.  It is an essential requirement of the human body for oxygen to keep your organs functioning.  If the body loses the ability of the lungs to process needed oxygen, your organs begin to die.  

Mary Lou was diagnosed with Pulmonary Fibrosis in 2009.  We didn’t have any indication there was anything wrong.  She went to a doctor’s appointment for a physical and her doctor heard something in her lungs.  She was referred to a pulmonologist.  After her exam with the pulmonologist Mary Lou went through a battery of breathing test.  Results showed she had early stages of Pulmonary Fibrosis.  Mary Lou was devastated, but admitted that she didn’t feel ill, wasn’t having trouble breathing, and felt great, or at least no different that she had prior to her diagnosis.  That was February of 2009.

Ron Sr & Mary Lou at Ron Jr's weddingThat spring for our anniversary, we took a cruise.  She had no problems walking the beaches of St Maarten, dancing the night away on the ship at the disco, or swimming in the ocean.  In her case, the effects Pulmonary Fibrosis we not immediate, however later that year in December she began to show signs of difficulty breathing.  I remember the day I observed her getting up from the couch to get a cup of coffee in the kitchen and she was laboring to breathe.  I asked her what was going on and she tried to shrug it off as being tired.  I asked her how long has it been that she was feeling short of breath.  She told me it had been two or three weeks or so.

The next day she went to the doctors.  They did the basic checks such as blood pressure, weight and then oxygen level with the finger probe.  Her oxygen level was 60%.  Normally the oxygen level in your blood should be 95% or higher.  The nurse thought the machine was broken and got a second probe to recheck it.  It was 60%.  They couldn’t believe it, and put her on oxygen immediately.  She was taken by ambulance to the hospital.  

IMG_2124Mary Lou spent 2 days in Elliot Hospital before the doctors told her that there was nothing more they could do there and they were working on getting her a bed at Mass General Hospital with a referral to the pulmonary surgical staff there.  She spent 3 weeks at MGH through Christmas that year and left there needing oxygen 24/7.  Over the next few months we had to go back to MGH numerous times for Pulmonary Function test to determine her level of Pulmonary Fibrosis.  The determination made was that she had PF bad enough to be placed on the lung transplant list for the Northeast.  

After having been on the transplant list for 18 months, on June 12, 2011, Mary Lou was called in for a double lung transplant.  She underwent the surgery, but spent 48 days under sedation and woke on July 30th.  There were many complications along the way and she was not recovering as quickly as the doctors would like to see.  After many months of recovery in the SICU at MGH, on the first of November she was sent to another unit where she was going to be slowly weaned off the oxygen while going through physical therapy and it looked like we were going to take her home. 

On the day of my birthday, I arrived at the hospital and spoke with the physical therapist that ensured me based on her Mary Lou’s progress that she would be on her way home within the week.  A great birthday present it was.  I left about 3pm that day, earlier than I normally would have because my son was taking me to dinner for my birthday.  I felt good about leaving her that day because of the good news and that she had some long time friends visiting her.  Mary Lou BrochureThe following morning, while heading into the hospital, I received a call from Mass General SICU, saying that Mary Lou had some problems overnight and they had to take her back to the SICU.  She went through a battery of testing again and they found a small mass on her right lung.  It was cancer, a very invasive and progressive cancer.  She never made it home.  She passed on Dec 18, 2011.

We continue to work hard to find ways to raise funds in memory of Mary Lou, to provide money for research to find a cure for Pulmonary Fibrosis.  In her memory and for the many people affected by Pulmonary Fibrosis, “Give a Gift of Breath”.