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Bulletin Board Notices
This space is provided at no cost to individuals or groups who conduct nonprofit or volunteer activities for the CFIDS community and for those who provide resources of interest to our members. The following posted items are not subject to review, and the CFIDS Association of America assumes no responsibility for content. Because all Web sites do not share the Association's commitment to privacy please make sure that you investigate all the links listed below before joining any groups and before you give out any personal information.
What: Showing of “Invisible” DVD about CFS
A film by Rik Carlson and Michael Thurston
VT CFIDS Association
Host: Northern VA (NOVA) CFS-FMS-OI Support Group
Date: Saturday, July 17, 2010
Time: 2:00-4:00 PM
Place: Sully Governmental Center
James McDonnell Room
4900 Stonecroft Blvd, Chantilly, VA 20151
(Same building as Sully District Police Station)
Directions: Please note internet maps and GPS systems put this building too close to Route 50.
It is within sight of the intersection of Stonecroft Blvd and Westfields Blvd.
It is very close to the intersection of Route 28 and the Westfields Blvd West exit.
This following link shows the building location moved to be in the correct spot:
http://events.insidenova.com/chantilly-va/events/show/127569545-dvd-showing-of-cfscfidsmefm-invisible
Host Website:http://www.cfsnova.com/events.html
Event Flyer:http://cfsnova.com/flyers/NOVA-InvisibleEvent.jpg
For more information:cfsupport-owner@yahoogroups.com
Elly Brosius (703) 968-9818
Toni Marshall (410) 647-7578
Purchase Invisible: http://www.invisiblethemovie.com/invisible_movie.html
Creative for a Second or Two
Following the success of Creative for a Second (www.creativeforasecond.com), Melbourne artist and designer I & The Others (a.k.a. Kirrily Anderson) has just launched her next CFS/ME project, Creative for a Second or Two.
Inspired by the 1000 Journals Project (www.1000journals.com), Kirrily is organising to send blank journals around the world to people with ME/CFS/CFIDS/FMS for them to fill up with anything they like - artwork, thoughts, photos, found objects, deep dark secrets!
Each person will have a journal for two weeks and then post it on to the next person on the list (there will be a mailing list in the back of each journal).
Should a contributor not be well enough to contribute anything within the two weeks they can add their name to the bottom of the list so the journal can come back to them, but it must keep moving. (The project is about expressing - not making a work of art necessarily, so even during the time of a crash, some frustration may be expressed in some way on the pages!)
There will be photo updates on the Creative For A Second Facebook group (feel free to join - just search for Creative For A Second under the groups section) Contributors can scan or photograph the journal while they have it - even make a movie, and upload it to the group so everyone can see how the journals are progressing!
After 12 months or so of circulating all the journals will be returned to Kirrily and she will take them apart and have all the pages on display as part of an exhibition, starting on Awareness Day (May 12, 2011). With finances permitting a book will also be published.
This is a project for anyone and everyone with this debilitating illness - not just "artists" - we all have creative bones within us! For more information, or to register your interest (just send an email with your postal address), email Kirrily directly at creativeforasecond@gmail.com
Recruitment for Genetic Risk Factors Study
Brigitte Huber, PhD, of Tufts University and Renee Taylor, PhD, of the University of Illinois at Chicago are seeking research participants ages 13 to 64 for a study of genetic risk factors that may be associated with CFS. To be eligible for the study, subjects should have documentation of a physician’s diagnosis of either CFS or mononucleosis. If interested, contact Dr. Taylor at rtaylor@uic.edu.
*Current as of 7/7/09
Pediatric ME/CFS
The Center for Community Research at DePaul University is studying fatigue in children and adolescents. We are looking for children and adolescents ages 10-17 and their parents/guardians to complete the DePaul Pediatric Health Questionnaire (DPHQ).
· The DPHQ is a short questionnaire and will take about 30 minutes to complete
· Participants and answers will be kept confidential
· Please mail the questionnaire back to us at your earliest convenience
Your time and voluntary assistance are needed and appreciated.
If you and your child are interested in volunteering, please contact:
Nicole Porter, Ph.D.
Email: nporter@depaul.edu
Telephone: (773) 325-4923
Lydia E Neilson M.S.M.
President/CEO
National ME/FM Action Network
http://www.mefmaction.net
*Current as of 7/7/09
Co-pay assistance for underinsured
Help raise awareness about co-payment assistance. The HealthWell Foundation provides financial assistance to underinsured individuals living with chronic or life-threatening illnesses such as cancer, asthma and autoimmune disorders. HealthWell has helped more than 40,000 patients afford their prescription drug co-payments, premiums and other out-of-pocket health care costs. Learn more at www.healthwellfoundation.org. To receive quarterly news updates, please e-mail support@healthwellfoundation.org.
Do you or someone you know suffer from Fibromyalgia?
If you are between the ages of 18 and 65 and are experiencing widespread pain, stiffness, and difficulty sleeping lasting for 3 months or longer, you may be eligible for participation in a 15 week clinical research study of an investigational treatment or Fibromyalgia Syndrome.
- Qualified Participants will receive at no cost
- Study related examinations
- Laboratory assessments
- Investigational study medication or placebo
For further information or to see if you may qualify, please contact a research site in your area:
Hunter-Hopkins Center
10344 Park Road, Suite 300
Charlotte, NC 28210
drlapp@drlapp.net
704-543-9692 ask for Wendy Fallick, Research Coordinator
*Current as of 6/29/09
In honor of Pain Awareness Month, the American Pain Foundation (APF) is releasing a free resource, “Pain Resource Guide: Getting the Help You Need,” to help patients navigate their pain care. The 32-page booklet, which will be available online, provides an overview of pain assessments and treatments and gives readers tips to help them find a pain specialist and support services, communicate with their healthcare provider and take an active role on their road to pain relief. For more information, visit http://www.painfoundation.org/
3/5/2007
New Center for Molecular Medicine will House Institute for Neuro-Immune Disease
The University of Nevada School of Medicine broke ground today on the first new medical research facility to be built at the University in more than 20 years. The Center for Molecular Medicine will house portions of the medical school's basic science research departments and serve as the headquarters for the Whittemore Peterson Institute for Neuro-Immune Disease and the northern center for Nevada Cancer Institute.
The Whittemore Peterson Institute will conduct research, provide clinical care of patients with CFS and fibromyalgia and develop educational programs for the community and physicians. The institute also seeks answers for patients with other chronic systemic illnesses including atypical MS, Gulf War Syndrome and autism; diseases that result from complex disorders of the immune system and brain.
For more on the institute, visit: http://www.wpinstitute.org
Support your favorite charity or school whenever you search the Internet.
GoodSearch is an Internet search engine with a simple concept and unique social mission. GoodSearch enables you to help fund any of hundreds of thousands of charities or schools through the simple act of searching the Internet.
The company was founded by a brother and sister team who lost their mom to cancer and wanted to find an easy way for people to support their favorite causes.
It's simple. You use GoodSearch.com like any other search engine (we've partnered with the leading search engine to ensure the best results), but each time you do, money is generated for your favorite cause. Visit http://www.goodsearch.com/ to get started.
What is 2-1-1?
2-1-1 is the human services equivalent of the 9-1-1 emergency line. Staffed by specially trained human servies specialists who are familiar with the myriad of programs and services available in every jurisdiction in your area - this service is designed to put those in crisis in touch quickly and efficiently with the agency that can best meet their needs. Non-profit organizations and federal, state and local government agencies are included in the database and you can access services in your community and statewide.
Food/Drug Interactions
While this Website may help clarify information about food/drug interactions patients are strongly advised to discuss the prescription medications they are taking with their healthcare providers.
Consumers and healthcare professionals seeking reliable information about food/drug interactions can turn to a new Web resource, according to a University of Florida pharmacy educator in natural products. The informative Website http://www.druginteractioncenter.org/houses a comprehensive database of food/drug interactions.
Disability Information
The Massachusetts CFIDS Association has a newly updated disability packet available to the public. You can download a free copy of “How to Apply for Social Security disability Benefits If You Have Chronic Fatigue Syndrome” from http://www.masscfids.org/ or purchase a hard copy for $12.
The CFIDS Association also has a disability packet available for $8. Available online or by calling the resource line at 704-365-2343.
I.C.E. — In Case of Emergency
A campaign encouraging people to enter an emergency contact number in their mobile phone’s memory under the heading ICE (In Case of Emergency), allows paramedics or police to be able to contact a designated relative next-of-kin in an emergency situation.
By adopting the ICE advice, your mobile phone will help the rescue services quickly contact a friend or relative - which could be vital in a life or death situation. It only takes a few seconds to do, and it could easily help save your life.
Why not put ICE in your phone now? Simply select a new contact in your phone book, enter the word ‘ICE’ and the number of the person you wish to be contacted.
Copyright 2004 Steven Howard
Steven Howard is a leading marketing consultant, keynote speaker, and author of CORPORATE IMAGE MANAGEMENT, POWERFUL MARKETING MINUTES, ASIAN WORDS OF WISDOM, and MORE Powerful Marketing Minutes. He may be contacted via email at steven@howard-marketing.com, or via his web site: www.howard-marketing.com.
New Rx assistance
A new Partnership for Prescription Assistance program offers people without prescription drug coverage a single point of access to more than 275 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies. To access the Partnership by phone, call 888-477-2669 or visit their Website at https://www.pparx.org/Intro.php.
Free Wheelchair Mission
Distributes wheelchairs free of charge to the physically disabled in greatest need. You can contact FWM at: Mailing address: P.O. Box 513538, Los Angeles, CA 90051-3538
Locally: 714-389-3140
Toll free: 1-800-733-0858.
E-mail: involve@freewheelchairmission.org
Web address: www.freewheelchairmission.org.
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