Pulmonary Fibrosis Support Group

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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.

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

Great Weather Predicted For This Weekends “Give A Gift Of Breath” Motorcycle Ride

Motorcycle (Maurice CC FLIKR)Motorcycle Riders Cruise Through Central New Hampshire For A Good Cause 

The Second Wind Foundation for Pulmonary Fibrosis Hosts annual “Give A Gift Of Breath” ride to help raise money for patient support and research.

(Hooksett,NH) This Saturday is expected to be a perfect September day in New Hampshire, and riders from all across the region are expected to take part in the “Give A Gift Of Breath” motorcycle ride to benefit The Second Wind Foundation for Pulmonary Fibrosis.

“Saturday is predicted to be a perfect day for a motorcycle ride,” said Ron Geoffroy, President of the Second Wind Foundation for Pulmonary Fibrosis.   “With the addition of live music by the Rik-Sha Band, and food provided by the Puritan Backroom, this could be our biggest ride to date.”

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 ride 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.

The ride kicks off from the Plumbers and Pipefitters Hall, 161 Londonderry Turnpike, Hooksett, NH at 10:30 am.  The cost is $25 per motorcycle, and $10 per additional rider. Registration starts at 8 am.

After the two-hour scenic New Hampshire ride, feast on lunch provided by The Puritan Backroom, and enjoy live rockabilly-blues music from the Rik-Sha Band.  There will also be silent auctions and raffles for great prizes from local restaurants and shops.

“We look forward to seeing everyone Saturday morning for the Give A Gift of Breath motorcycle ride,” added Geoffroy.


Bikes and Riders



Rik-Sha Blues Band To Perform At Second Wind Motorcycle Ride, Volunteers Still Needed

The summer is slowly coming to a close and that means that the Second Wind Foundation’s annual motorcycle ride is fast approaching. If you have not signed up to take part in the “Gift of Breathe Ride,” click here to sign up.

We are pleased to announce that after this years ride, the Second Wind Foundation will be providing live music for you to enjoy while you feast on food from the Puritan Back Room.

 

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The Rik-Sha Band will be performing their own mix of rock and blues. They will entertain you with a mix of music from Hendrix, to CCR, to Neil Young and some they wrote themselves.

Rik-shaw1

We are also looking for people who would be interested in volunteering for the event. We will need people to help set up food, tables, register riders, etc. If you are interested in volunteering, email Ron, by clicking here.

We look forward to seeing you all there on September 13th!

Remember if you sign up before the end of August you can save $5.00 on your registration fee.

 

FDA Holds Public Meeting On Idiopathic Pulmonary Fibrosis Patient-Focused Drug Development

FDA LOGO
On September 26, 2014, FDA is conducting a public meeting on Idiopathic Pulmonary Fibrosis Patient-Focused Drug Development.

Date:                September 26, 2014

Time:               1:00 a.m. to 5:00 p.m.

Location:         FDA White Oak Campus

10903 New Hampshire Ave.

Building 31 Conference Center, The Great Room (Rm 1503)

Silver Spring, MD 20993

FDA is interested in obtaining patient input on symptoms and daily impacts that matter most to patients (topic 1), and current available approaches to treat idiopathic pulmonary fibrosis (topic 2). The questions for discussion on these topics are below.

For each of these topics, a panel of patients and patient representatives/advocates will present comments to begin the dialogue and will be followed by a facilitated discussion inviting comments from all patients and patient representatives in the audience.

If you are interested in providing comments as part of the initial panel discussion, indicate so during the registration process. Panelists will be confirmed prior to the meeting.

There will also be an opportunity for patients, patient representatives and others to provide comments on issues other than topics 1 and 2 during an Open Public Comment session. Sign up for Open Public Comment will take place the day of the meeting.

Webcast participants will also have an opportunity to provide input through webcast comments.

For more information, refer to the FDA meeting website at: http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm395774.htm

Questions for Discussion

Topic 1: Disease signs, symptoms and daily impacts that matter most to patients

1)    Of all the symptoms that you experience because of the condition, which 1-3 symptoms have the most significant impact on your life? (Examples may include shortness of breath, cough, fatigue, etc.)

2)    Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include household chorse, walking up the stairs, etc.)

a)    How do your symptoms and their negative impacts affect your daily life on the best days? On the worst days?

3)    How has your condition and its symptoms changed over time?

Topic 2: Patient perspectives on current approaches to treating idiopathic pulmonary fibrosis

1)    What are you currenty doing to help treat the condition or its symptoms? (Examples may include prescription medicines, over-the-counter products, and other therapies including non-drug therapies such as diet modification.)

a) How well does your current treatment regimen treat the most significant symptoms of your diease?

2)    What are the most significant downsides to your current treatments and how do they affect your daily life? (Examples of downsides may include bothersome side effects, going to the hospital for treatment, etc.)

3)    Because there is no complete cure for your condition, what specific things would you look for in an ideal treatment for your condition?

SIGN UP

Click here to sign up to attend in person or via webcast

New Inhaled “Pirfenidone” Treatment For PF Begins Trials In Early 2015

InhalerGenoa Pharmaceuticals Receives Orphan-Drug Designation for Pirfenidone in the Inhaled Treatment of Idiopathic Pulmonary Fibrosis (IPF)

SAN DIEGO, Aug. 5, 2014 /PRNewswire/ — Genoa Pharmaceuticals, the leader in inhaled medicines for pulmonary fibrosis, today announced the U.S. Food and Drug Administration (FDA) has granted orphan-drug designation to Genoa for the use of pirfenidone in their lead program – inhaled GP-101 for the treatment of IPF.

“Acquiring orphan status marks an important regulatory milestone in GP-101’s life cycle to treat people with this devastating disease,” said Mark Surber, Ph.D., Genoa’s President and Chief Executive Officer. “We are pleased to continue the development of inhaled GP-101, with clinical trials beginning in early 2015.”

Oral pirfenidone (Esbriet®) has shown promise to slow IPF disease progression. Unfortunately, a very large oral dose is required to achieve efficacious lung levels. Despite being established at the upper safety threshold (801 mg TID), the resulting oral-delivered lung dose is too low for optimal effect. Moreover, gastrointestinal exposure and large-associated blood levels remain poorly tolerated. For these reasons oral-dose escalation for optimal IPF efficacy is not possible. Complicating matters, dose-absorbing food, first-pass metabolism, and safety-driven dose-reduction and stoppage protocols further reduce lung dose and interrupt maintenance therapy.

To address oral shortcomings and maximize IPF efficacy, Genoa has reformulated pirfenidone for aerosol formation and inhaled, direct-lung delivery (GP-101).  By this approach, ~160-fold less inhaled pirfenidone is predicted to deliver Esbriet-equivalent IPF efficacy (5 mg vs. 801 mg). With such a small inhaled dose, remaining safety and tolerability concerns may be eliminated, enabling improved patient compliance and an increased inhaled dose for superior IPF efficacy. In addition to serving as an improved-effect Esbriet replacement, a safe and well-tolerated inhaled product is expected to enable desired, but otherwise poorly-tolerated combination regimens (e.g., with Boehringer Ingelheim’s Nintedanib).

About Orphan Drug Designation

Orphan drug designation is a status assigned to a medicine intended for use in rare diseases. In the U.S., the Orphan Drug Designation program provides orphan status to medicines intended for the safe and effective treatment or prevention of rare diseases that affect fewer than 200,000 people. In the E.U., a medicine must meet similar criteria, affecting up to five in 10,000 people. Orphan designation for inhaled GP-101 will be pursued in the E.U. with clinical data.  Orphan status provides sponsors with development and commercial incentives, including 7 and 10 years market exclusivity for these two regions, respectively.

About IPF

IPF is a fatal lung disease caused by both genetic and environmental factors resulting in progressive lung scarring and death due to respiratory failure and/or co-morbidities.  Characterized by a dry cough, shortness of breath and decreased exercise capacity, this disease exhibits a post-diagnosis survival period of ~2-5 years, annually killing more people than breast cancer. As fibrosis is at present irreversible, an efficacious product will provide a well-tolerated stand-alone or combination maintenance therapy that protects healthy lung tissue against invading fibrosis or meaningfully slows disease progression.

About Genoa Pharmaceuticals

Genoa Pharmaceuticals, Inc. is committed to developing improved therapies for the treatment of IPF. Based in San Diego, Genoa’s lead program, GP-101 (aerosol pirfenidone) plans to enter clinical trials in early 2015. Learn more atwww.genoapharma.com