Pulmonary Fibrosis Support Group

Support-Group-Small-650x432
Pulmonary Fibrosis Support Group starting up in Southern NH.

The Second Wind Foundation for Pulmonary Fibrosis is sponsoring a Pulmonary Fibrosis Support Group in Southern New Hampshire on Wednesday October 21st at 1:00pm at the Plumbers and Pipefitters Hall, 161 Londonderry Turnpike (Route Bypass 28), Hooksett, NH 03016. The foundation is teaming up with pulmonary fibrosis patients in the Manchester, NH area who are interested in having a support group locally.

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 affects 500,000 people in the US.

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.

Ron Geoffroy President stated “ I’m proud to announce this new direction for our foundation in helping to establish a support group here in Southern New Hampshire for Pulmonary Fibrosis patients that want more information and have questions about their disease”.

The Second Wind Foundation for Pulmonary Fibrosis is a non-profit charitable organization that helps to raise awareness, provide funding for research, and help families who suffer from Pulmonary Fibrosis. More information about the Second Wind Foundation and Pulmonary Fibrosis can be found at our website, http://secondwindforpf.com. Tax deductible donations can be made at http://secondwindforpf.com/about/make-a-donation/

Support Group Flyer

American Thoracic Society and PF

General Information about Pulmonary Fibrosis

Pulmonary Fibrosis Week

Pulmonary fibrosis is a lung condition characterized by extensive scarring of the lung.  This usually includes extensive deposition of collagen and other components of the extracellular matrix, loss of normal lung architecture and change in the functions of the cells in the lung that lead to shortness of breath and ultimately, respiratory failure.  Pulmonary fibrosis can be triggered or worsened by environmental or occupational exposures: tobacco smoke, infection, drugs or can be secondary to autoimmune and inflammatory disorders.  Idiopathic pulmonary fibrosis (IPF) is a disease in which progressive lung scarring occurs without an obvious cause.  Idiopathic pulmonary fibrosis represents a significant health problem as it is estimated that close to 200,000 patients are affected in the US and over 5 million patients worldwide.  The disease has a mortality rate of 50% in 3-5 years after diagnosis, but the course is variable.  Based on current guidelines the diagnosis of idiopathic pulmonary fibrosis requires a multidisciplinary approach and is usually based on the patient’s history, pulmonary functions, high-resolution computed tomographic images and sometimes lung biopsy.

Exclusion of known causes of pulmonary fibrosis is required as therapeutic approaches may differ. Over the last decades there has been significant progress in idiopathic pulmonary fibrosis research. Using animal models of lung fibrosis, studies have identified pathways that lead to pulmonary fibrosis and promising new targets for therapeutic interventions. Significant progress has been made in understanding the role of gene variants in causing pulmonary fibrosis. The identification of genes that cause the less common familial form of pulmonary fibrosis provided significant insights into mechanisms of disease.  Using advanced genomic technologies, in patients with the more common sporadic idiopathic pulmonary fibrosis, investigators have identified gene variants that are associated with idiopathic pulmonary fibrosis in more than a third of cases, providing support for a genetic predisposition for the disease in the general population.

Using novel technologies investigators identified genes and proteins in the blood stream that are characteristics of the disease and predictive outcomes that could potentially serve as biomarkers.  A series of ambitious drug studies led to significant changes in the management of patients with idiopathic pulmonary fibrosis.  A commonly prescribed immunosuppressive regimen was proven to be dangerous for patients and is no longer in use and replaced by two drugs (Pirfenidone and Nintedanib) that have been proven to slow down the progression of the disease, leading to their subsequent approval by the FDA.  The scientific achievements of the recent decade have increased interest and awareness to idiopathic pulmonary fibrosis research and many exciting developments will follow. There are multiple additional drug studies that are under way and will be completed in the next few years. The National Heart, Lung and Blood Institute of the National Institutes of Health (NIH), despite limited funding, continues to fund translational clinical research in pulmonary fibrosis, and most recently in their Centers for Advanced Diagnostics and Experimental Therapeutics (CADET II) included several studies that focus on novel therapies for idiopathic pulmonary fibrosis. The American Thoracic Society in partnership with patient advocacy groups and medical professionals continue to both fund pulmonary fibrosis research as well as lobby for increased funding for research. The road to curing idiopathic pulmonary fibrosis is long but the breakthroughs in recent years indeed transformed our perception of idiopathic pulmonary fibrosis, from hopeless to hopeful.

 

For additional information CLICK HERE

Article from American Thoracic Society

Study Title: A Study of Symptoms and Activity in Pulmonary Fibrosis (PF)

The National Jewish Health is conducting a study on Symptoms and Activity in Pulmonary Fibrosis.

Why

The medical field knows very little about how symptoms and activity levels change over time, or in response to supplemental oxygen use, in patients with PF.

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 how symptoms and activity levels change in patients with pulmonary fibrosis (PF), from before to after daytime oxygen is initiated

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

Click on the link HERE to go to the website.

The Second Wind Foundation Donates $5,000 To Massachusetts General Hospital To Further Research On Pulmonary Fibrosis

Second Wind Foundation for Pulmonary Fibrosis President Ron Geoffroy and Dr Tager Others in the photo: Katharine Black, MD Rachel Knipe, MD David Lagares, MD  Neil Ahluwalia, MD  Flavia Castelino, MD  Veronica Pace, MD Paula Grasberger, MD

Second Wind Foundation for Pulmonary Fibrosis President Ron Geoffroy and Dr Tager
Others in the photo: Katharine Black, MD Rachel Knipe, MD David Lagares, MD Neil Ahluwalia, MD Flavia Castelino, MD Veronica Pace, MD Paula Grasberger, MD

(Manchester, NH) This week Ron Geoffroy, President of the Second Wind Foundation for Pulmonary Fibrosis, delivered a check for $5,000 to Dr Tager, who accepted the check on behalf of the Massachusetts General Hospital. Massachusetts General Hospital is well known throughout the country for their cutting edge research on 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.

“We are deeply appreciative of all that the Second Wind Foundation is doing to raise awareness of pulmonary fibrosis and to advance our research in pursuit of new treatments for this devastating disease,” said Dr Tager. “Philanthropic support is vital to ensuring that our team of researchers at Mass General can explore multiple avenues toward discoveries that can improve the lives of countless patients and their families. I can’t thank Ron, the board members and all of the Second Wind Foundation supporters enough for their generosity.”

Second Wind Foundation for Pulmonary Fibrosis President Ron Geoffroy and Dr Tager

Second Wind Foundation for Pulmonary Fibrosis President Ron Geoffroy and Dr Tager

“In particular, our laboratory will use the funds so generously provided by the Second Wind Foundation to support the research we do with the diseased lungs of patients with pulmonary fibrosis who receive lung transplants.  After these lungs are removed as part of the transplant procedure, they provide us with an invaluable window into how pulmonary fibrosis progresses to the point where it becomes life-threatening,” concluded Dr. Tager.

“We are proud to be presenting this $5,000 check to Massachusetts General Hospital for their work and support for those who suffer from Pulmonary Fibrosis,” said Ron Geoffroy, President of the Second Wind Foundation for Pulmonary Fibrosis.  “One day, we will find a cure for Pulmonary Fibrosis, and it could be from research being conducted at Massachusetts General Hospital.”

This is the third year in a row that the Second Wind Foundation has donated to Massachusetts General Hospital specifically for research on Pulmonary Fibrosis.  The Second Wind Foundation was able to make this donation thanks to generous private donations and fundraisers like our annual “Hockey Night” fundraiser with the Manchester Monarchs coming up on Feb. 7th.  To purchase tickets to the Manchester Monarchs “Pink in the Rink” hockey game through the Second Wind Foundation go to http://secondwindforpf.com/2014/10/join-us-for-hockey-night-fundraiser-with-the-manchester-monarchs/.

For more information on the Second Wind Foundation for Pulmonary Fibrosis go to http://secondwindforpf.com/.

 

The Second Wind Foundation For Pulmonary Fibrosis

Ron and MaryLou Geoffroy started The Second Wind Foundation for Pulmonary Fibrosis in 2010 after MaryLou was diagnosed with Pulmonary Fibrosis.  They struggled to find information and support for people with PF. Ron and MaryLou started the foundation because they wanted to help raise awareness and money to support continued research for this unknown disease.  The Second Wind Foundation for Pulmonary Fibrosis continues to educate the public about this rare but deadly disease, raise money for research and to help families suffering with PF.

Ron Geoffroy continues to lead the Second Wind Foundation in loving memory of his late wife.

RELEASE: The Second Wind Foundation For Pulmonary Fibrosis Teams Up With The Manchester Monarchs For Hockey Night Fundraiser

cropped-Second-Wind-Foundation-Final-Copy-1-e1359993411518.jpgImmediate Release
Contact Ron Geoffroy
Info@SecondWindforPF.com

(Auburn, NH) – The Second Wind Foundation for Pulmonary Fibrosis has once again teamed up with the Manchester Monarchs for a hockey night fundraiser.

The Second Wind Foundation is selling tickets to the Monarchs annual “Pink In The Rink” game on February 7th , against the Providence Bruins. Tickets can be purchased for $20 dollars with $8.00 from each ticket going directly to the Second Wind Foundation for Pulmonary Fibrosis.

The “Pink in the Rink” night is a very special night for the Manchester Monarchs and Catholic Medical Center, as a portion of each ticket sold will be given directly to CMC. Last year the Monarchs and CMC raised over $10,000 in ticket sales and raffles. If you get your tickets from the Second Wind Foundation you will be able to support two great causes.

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.

The annual fundraiser brings in much needed donations that are used to fund ongoing research, like the “Pirfenidone” drug trials. The donations also go to our new “Breathe Easy” program that provides monetary support for families who are suffering with Pulmonary Fibrosis. The Second Wind Foundation provides qualifying families with gas cards to ease the cost of multiple visits to pulmonary specialists.

This year the Second Wind Foundation donated $5,000 to the Massachusetts General Hospital for their ground-breaking research on Pulmonary Fibrosis.

“Our annual hockey night fundraiser is one of my favorite events,” said Ron Geoffroy, President of the Second Wind Foundation for Pulmonary Fibrosis. “This is a great opportunity for families to enjoy professional level hockey while supporting two great causes.”

For more information and to purchase tickets go to http://secondwindforpf.com/.

The Second Wind Foundation For Pulmonary Fibrosis 

Ron and MaryLou Geoffroy started The Second Wind Foundation for Pulmonary Fibrosis in 2010 after MaryLou was diagnosed with Pulmonary Fibrosis. They struggled to find information and support for people with PF. Ron and MaryLou started the foundation because they wanted to help raise awareness and money to support continued research for this unknown disease. The Second Wind Foundation for Pulmonary Fibrosis continues to educate the public about this rare but deadly disease, raise money for research and to help families suffering with PF. 

Ron Geoffroy continues to lead the Second Wind Foundation in loving memory of his late wife.

New Drug (Nintedanib) Can Slow Pulmonary Fibrosis Progression

We at the Second Wind Foundation for Pulmonary Fibrosis, work to raise awareness about this rare but deadly disease.  We are also raising money to help fund research projects similar to this one below.  Come join us at our annual charity night with the Manchester Monarchs.  This year it will be on Feb 7th for “Pink in the Rink.”

Below is a press release from Boehringer Ingelheim a european drug manufacturer who is working on a drug that is showing real progress in slowing the progression of IPF in trials.

Nintedanib* receives positive CHMP opinion in
European Union for the treatment of IPF

Boehringer Ingelheim today announced that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has issued a positive opinion for nintedanib* (suggested brand name OFEV®) for the treatment of patients with idiopathic pulmonary fibrosis (IPF). Results from the Phase III INPULSIS® trials published in the New England Journal of Medicine in May showed that nintedanib* significantly slowed disease progression in a broad range of patients with IPF**.1 The opinion comes after the recent Food and Drug Administration (FDA) approval of nintedanib* for the treatment of IPF.

“Boehringer Ingelheim welcomes the decision by the CHMP. There has been a high unmet need for effective treatments that can slow disease progression in IPF. We look forward to making nintedanib available soon to patients with IPF in the EU” said Professor Klaus Dugi Chief Medical Officer Boehringer Ingelheim.

IPF is a debilitating and fatal lung disease with a median survival of 2–3 years after diagnosis.2 It causes progressive scarring of the lungs resulting in continual and irreversible deterioration in lung function and difficulty breathing.3

“This decision is very encouraging as patients with IPF currently have very limited treatment options” said INPULSIS® study investigator Professor Luca Richeldi Professor of Respiratory Medicine Chair of Interstitial Lung Disease at the University of Southampton United Kingdom. “For the first time we have a drug that has consistently met the primary endpoint in two large Phase III trials confirming the results of the Phase II trial.”

The CHMP’s positive opinion is based on pivotal data from the replicate Phase III INPULSIS® trials involving 1066 patients from 24 countries. INPULSIS® results showed that nintedanib* slowed disease progression by reducing the annual rate of decline in lung function by 50% in a broad range of IPF patient types: this included patients with early disease (forced vital capacity (FVC) >90% pred) limited radiographic fibrosis (no honeycombing) on high resolution computed tomography (HRCT) and those with emphysema.1 As well nintedanib* significantly reduced the risk of adjudicated acute exacerbations by 68%.1 This can be crucial given that approximately 50% of patients hospitalised for an acute IPF exacerbation die during hospitalisation.4

Nintedanib* in IPF has been granted accelerated assessment by the EMA. Nintedanib* one capsule twice a day is the first treatment for IPF that has consistently demonstrated a significant reduction in the decline in lung function and has a manageable side effect profile.1 More than 90% of eligible patients who participated in the INPULSIS® trials opted to continue with nintedanib* treatment as part of an open-label extension trial.5

*Nintedanib is currently being assessed by the European Medicines Agency (EMA) and other regulatory organisations worldwide

**INPULSIS® recruited a broad range of patient types – similar to those seen in clinical practice including patients with early disease (FVC > 90% pred) no honeycombing on HRCT and/or concomitant emphysema

‡Adjudicated exacerbations’ was a pre-specified sensitivity analysis in the pooled data set. Time to first Investigator-reported exacerbation was a secondary endpoint which was met in TOMORROW and INPULSIS®-2 but not in INPULSIS®-1

~ENDS~

Please click on the link below for ‘Notes to Editors’ and ‘References’:http://www.boehringer-ingelheim.com/news/news_releases/press_releases/2014/21_november_2014_ipf.html

 

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!

 

Join Us For Hockey Night Fundraiser With The Manchester Monarchs

The Second Wind Foundation for Pulmonary Fibrosis will hold annual hockey night fundraiser on Feb. 7th 2015,
coinciding  with the Monarchs “Pink in the Rink.”

monarchs

Are you ready for some bone crushing hits, blue line slapshots, and professional hockey right here in Manchester?  Look no further than the Manchester Monarchs.  New Hampshire’s own pink-in-the-rinksemi-pro hockey team provides NHL level hockey without all the hassle of driving into Boston.

The Second Wind Foundation for Pulmonary Fibrosis has teamed up with the Manchester Monarchs for an exciting fundraiser. Not only do you get you watch great hockey but every ticket sold donates $8 to the Second Wind Foundation.  The Second Wind Foundation will also be the recipient of 1/2 the proceeds from tickets sold for the Monarchs Hockey Shirt Raffle the night of the game.

1209-man-pinkJoin us on Saturday February 7th, 2014 as we cheer on the Monarchs against the Providence Bruins.  This year we have teamed up with the Manchester Monarchs for “Pink In The Rink” night. This annual event is one of the highlights of the Monarchs season where they dye the entire rink pink in honor of Breast Cancer Awareness.  Tickets for this annual game are a very hot commodity so be sure to get your tickets today!

Tickets are just $20 per person.  With every ticket you get to ‘Chuck – a- Puck’ for a chance to win great Monarchs prizes! Also, 3 people will be randomly drawn to go an meet the players after the game.

manchester_monarchs_2002Last year we had over 125 people join us for this great event.  This year we are looking to sell 250 tickets, so be sure to invite your friends.  You can purchase tickets via paypal (below) or by calling Ron at (603) 396-9535.

If you need more information you can email us at Events@SecondWindforPF.com

We hope to see you at the game.

Do not forget to get your Second Wind T-Shirt before the game!

 

To buy tickets, click ADD TO CART. A new window will open and you will need to enter the number of tickets you would like to purchase.


Tickets are $20 each.



“Give A Gift of Breath” Ride for Research and Support

 

Motorcycle riders (Brandon Gordon - CC - FLIKR)

 

Our Ride was a success and many thanks to all of those riders that attended our event.

A very special Thanks to The Puritan BackRoom and Mr. Chris Pappas for providing our event with the food for our bikers.   and the Plumbers and Pipefitters Local 131 for the use of their location.

 

Also thank you to all of the organizations that provided items for our raffles:

Manchester Monarchs

New Hampshire Fisher Cats

T-Bones

J P Cycles

Giovanni’s Londonderry

Derry Five Star Cinemas

Purple Finch

The Hair Game

Revive Salon

Before Our Annual Ride, We Offer “A Bikers Prayer”

Tomorrow is our annual Give A Gift Of Breath motorcycle ride.  Here is a short prayer for all the bikers who join us.  Click here for more details on our ride!

Motorcycle riders (Brandon Gordon - CC - FLIKR)

A Biker’s Prayer

May the sun rise in front of me. May the rain fall behind me and the wind follow me.

May the angels of my brothers and sisters who have gone before me guard my travels, for they know the perils of the road ahead of me.

Keep me safe through the rough city streets on my way to the land of the swirling turns and rolling hills.

Let the turning colors of fall keep me warm. Let the eagle guide me to the mountain tops. Let the Moon’s light guide me through the night.

May my tires not fail me, nor my engine grow old. May my bike draw life from the streams I pass.

Keep my seat soft and my mind sharp. Let the air of spring breathe life into my soul, to journey to another adventure beside my brothers and sisters.

Come join us on the open road this fall weekend and “Give the Gift of Breath”!

Posted by: Karen Casey