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THIS MEETING HAS CONCLUDED
Mark Your Calendar for July 9, 2012!
Time: 1:30 – 3:00 p.m.
Refreshments Provided Courtesy Of:
LinCare
Kraus Auditorium
Chippenham Medical Center
7101 Jahnke Road
Richmond, VA 23225
- Click Here -
Questions? Call the Facilitator, Russell Glover (804) 378.0628. Donation in Memoriam page
OUR SPONSORS
Chippemham Hospital of CJW is our largest supporter
Lincare, Rachele Clement, Representative
Louisa Home Care, Roger Householder, Representative
Roberts Home Medical, Jo Lynn Hamelman Supervisor
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.
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.
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
The ASCEND trial is a large clinical trial currently enrolling patients in the United States, Mexico, Australia, New Zealand and select South American countries. This trial is designed to evaluate the efficacy and safety of treatment with pirfenidone in patients with idiopathic pulmonary fibrosis (IPF).
MORE INFO AT acendtrial.com
With an illness like Lung Disease, often a feeling of hopelessness and loss of control becomes the norm. With a support group, participants are able to regain that sense of control and exercise authority toward management of their situation.
Support groups can be instrumental in improving psychological motivation. By simply getting "out of the house" and joining with other people with an understanding of the problems being faced, a positive attitude can be nurtured and improved.
Any individual that is lung affected can become a member. However, recognizing that it is not only the individual with the lung disease that needs support we encourage the caregivers or “care partners” and other family to join and attend the meetings. Learning and receiving support together helps to equalize the disease experience for all who are involved.
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.
More links being organized, if you have suggestions of good, quality information sources, please send it to us.
Do you know of a currently operating pulmonary support group? We are compiling a list for this website: if you know of one, let us know. Thanks.
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
Site by
Erik Weems
