EFFORTS - P. O. Box 20241
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This is a report of the June 11, 2012 American Thoracic Society Public Advisory Roundtable  Meeting that Karen Deitemeyer attended in Washington, DC,  on behalf of EFFORTS. If you do not have time to read the entire report, please be sure to read the four  Q & A at the end.  Dr. Tony Punturieri, Program Director, Division of Lung Diseases at the NHLBI answered questions provided by EFFORTS members .

 

There were 21 people present, representing the ATS staff and  staff or  patients from various lung disease patient organizations.  The attendees with COPD groups were Karen Deitemeyer, representing EFFORTS, Vlady Rosenbaum from COPD-ALERT and Miriam O’Day, representing the Alpha-1 Foundation.

 

Other attendees represented the Hermansky-Pudlak Syndrome Network, Inc;  the Asthma and Allergy Foundation of America; the Lymphangiomatosis and Gorham’s Disease Alliance; the Pulmonary Hypertension Association, Inc.; the LAM Foundation (lymphangioleiomyomatosis); the Coalition for Pulmonary Fibrosis; the Children’s Interstitial Lung Disease Foundation; the Central Indiana Sarcoidosis Support Group; the Foundation for Sarcoidosis Research; the Pulmonary Fibrosis Foundation ; and the Sclerodema Foundation, as well as several staff with ATS.

 

Teresa Barnes, PAR Chair , opened the meeting with introductions and then asked each of us to remember that when we entered the room we leave our individual diseases at the door and we work collectively for the good of all.  Later in the day she asked us to take a piece of paper and list three things - Patient Care; Research; Advocacy.  Under those 3 headings she asked us to jot down a couple of things we can encourage our groups to become involved in and turn them in at the end of the day.  Again, these were to be areas in which our specific group can help ALL lung disease patients.

 

Patient Care –      help provide info to local doctors about rare lung diseases and the importance of the doctors being sure about the diagnosis. Get flyers into PCP offices.

 

Research  -            Patients must mobilize to help fund grants (not just specific to our own disease)

                                Encourage patient participation in clinical trials

                                Have link on our website

 

Advocacy -           Encourage patients/caregivers to meet with legislators – become the “face” of lung disease

                                Invite legislators to local group meetings

 

 

She also asked us to think about what we are going to do to celebrate and educate on World Spirometry Day.  And instead of it just being one day, activities will run for probably a month.

 

 

 

Jill Raleigh, Executive Director of the LAM Foundation, gave a presentation on putting together an annual conference - they started about 10 years ago with only 9 known patients and have grown to 1200 patients and are quite successful in raising funds. Many times women with LAM are misdiagnosed with asthma or even COPD.  Since there are only 1,200 known patients with LAM in the US, it’s not a well-known disease at all.

 

Rino Aldrighetti, President of the PH Association, talked about building out a support group network.  Using websites; facebook; list serves; monthly support group leader webinars; they received a grant from Medtronic - grant application re-open in August 2012.  Something EFFORTS might want to look into?

 

In order for me to meet with Dr. Tony Punturieri and Dr. Lisa Postow***** (see questions and answers at the end of this report)***** I had to miss the next two presentations entitled “Funding Research - Partnering with the ATS“, and “Tips for Helping your Nonprofit Secure Corporate Sponsorships (but I have information on that on a flash drive and will see if it can be attached to an email

 

Miriam O-Day shared a new Alpha-1 tool kit that they have just designed - very helpful in the event that people will end up in the State Insurance Exchanges - the kit can be shared on our website, if we wish.  Not sure if it’s on-line yet – I checked both the Apha-1 Foundation and the Alpha-1 Association’s websites and do not see it yet.

 

During lunch we talked about what questions we’d like to pose to the NHLBI at Monday night’s session:

 

Dr. Crane, ATS Exec. Director, went over the ATS Mission Statement and reminded us that each PAR representative can apply to become a member of ATS.  The ATS Foundation and the ATS are separate entities.  ATS cannot raise funds, but the Foundation can.

 

He also told us that no other medical society has a group like ours where professionals and patient groups work together.

 

We then adjourned until the opening session of the NHLBI PIO in the evening.

 

***** Questions and responses from Dr. Tony Puntureiri and Dr. Lisa Postow*****

 

 

Q1)         Lung stem cell transplantation – where do you feel we are right now and do you have any guess as to how soon we will see clinical trial on humans? 

A1)         There is research being done with “progenitor cells” (definition here:  http://en.wikipedia.org/wiki/Progenitor_cell).  Here’s a link to an article describing the new research http://www.bu.edu/today/2012/from-stem-cells-to-lung-cells/

“How do you grow stem cells into lungs? The question has puzzled scientists for years. First you need the right recipe, and it took BU researchers Darrell Kotton, Tyler Longmire, and Laertis Ikonomou seven years of trial and error and painstaking science to come up with it.”

Dr. Tony said he feels VERY good about the research that’s being done in this area!!

 

Q2)         What research is being done specifically for COPD that is directed toward finding a cure?

A2)         Dr Tony says he feel that it’s going to happen (he agrees with Dr. Stephen Rennard on this) but that to have a time-table would not be realistic - things like the research into the above progenitor cells are working toward that end.  What he feels will happen sooner is that they will discover how to stop the disease and keep it from deteriorating any further.  So that while we may not regain lung function, we will not deteriorate any further.  And of course, the earlier someone is diagnosed, the better this will be for them.  

 

Q3)         What progress is being made to identify subsets of COPD such as early onset emphysema which is not alpha one?

A3)         There is much work being done with epigenetics - def here: http://en.wikipedia.org/wiki/Epigenetics.  Epigenetics involves those features that are "on top of" or "in addition to" genetics.  Study of the whole patient, rather than just the lungs.  This will help them to identify subsets of COPD patients                

 

Q4)         What are you doing to try to ensure that someone is keeping track of all the research that’s being done so that people can see how what they are doing fits with everything else going on?  i.e. “translational research” picking up on the things others have discovered or failures that are important to know about so we don’t go there again. 

A4)         If it’s government funded - i.e. NIH or CDC, etc.,  or  then ALL results of research are available to the public.  If privately funded, may not know that it failed - the FDA is pushing hard to get private researchers to be open, but cannot be controlled. 

 

This is a direct quote from Dr. Tony “I think we really need to be optimistic about the future for COPD patients.”

 

 

 

 

 

 

 

 

 




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