FW: FSR Sarcoidosis Update (August 2007)--Second try

[Guest guest]

The copy I received from my forwarded effort wasn't easy to read, so I've tried a different tack. Hope you can read at least one of them!

Ramblin' Rose

Moderator

Reply-To: info@...To: mamadogrose@...Subject: FSR Sarcoidosis Update (August 2007)Date: Wed, 1 Aug 2007 16:03:54 -0400 (EDT)

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August 2007

New This Month

Chicago Lung Health Walk Planned

Translated Research Findings - Biomarkers

FSR Announces New T-shirt

Researcher Feedback Requested - Biospecimen Survey

Sarcoidosis Clinical Trials

FSR Upcoming Events

Ask the Sarcoidosis Expert

Although I was diagnosed two years ago, I have been having new problems recently and I feel very isolated. How can I find someone to talk to who understands my symptoms?

Sarcoidosis is a multi-system disorder. Symptoms typically depend on which organs the disease affects and often the physical symptoms are life-altering. In addition, about one-third of all patients experience non-specific symptoms that include fever, fatigue, night sweats and an overall feeling of ill-health, forcing many patients to limit activities they once enjoyed. Unfortunately, patients report these symptoms are the most likely to be dismissed by their doctors and sometimes their family and friends.

It is probably no surprise that long term illness can cause emotional problems along with the physical ones. Research shows that more than half of people with sarcoidosis symptoms also show signs of clinical depression. Among the most likely to be depressed are people who have severe disease, who have limited access to medical care, or who have trouble paying for their medical care. Being a woman is also a risk factor. Persistent feelings of sadness, emptiness and anxiety are all signs of depression that you should discuss with your doctor.

Talking with and learning from others who have had similar experiences may also help you face the challenges of coping with sarcoidosis. FSR has two programs that can help put you in contact with other sarcoidosis patients. Read on...

Support Team Sarcoidosis!

This month we are delighted to announce our new partnership with the Respiratory Health Association of Metropolitan Chicago (formerly the ALA of Chicago) and several other community health organizations to raise awareness of and financial support for lung diseases through the first annual 'Hike for Lung Health' fundraising walk to be held in Chicago on September 23rd.

, daughter of famed NBA player Bill , has agreed to join FSR President as Co-Captain of FSR Team Sarcoidosis. They have set a goal of raising $10,000.00 to support critical research and education initiatives at the Foundation.

We think this walk provides a unique opportunity to join with other patients to bring attention to this disease and to raise important funds for sarcoidosis research. We hope we can count on your support as a walker or as a sponsor of our Team Captains.

Read the article below for additional details about how to participate or Click Here.

Chicago Lung Health Walk Planned

On September 23rd, patients and their families registered for 'Team Sarcoidosis' will join walkers representing teams for a range of lung diseases at a fundraising walk along Chicago's lakefront.

To identify our 'Team Sarcoidosis' (which we hope will be among the largest) our walkers will receive a special thank you gift from FSR and additional prizes will be awarded to walkers who raise the largest amount in pledges.

How to Help:

Register as a Team Sarcoidosis (fee is $10).

Sponsor Team Captains , or another walker (any donation amount).

Make a General Donation to Support Team Sarcoidosis.

Learn More!

Translated Research Findings - Biomarkers

Each month, new information on studies and related articles in popular and scientific publications is offered as a resource to patients and professionals seeking up-to-date information on sarcoidosis.

Currently available blood tests have not been able to definitively provide doctors with a diagnosis of sarcoidosis. Learn more about a recent Dutch study to detect potential biomarkers in the blood serum of sarcoidosis patients using a techinique called surface-enhanced laser desorption ionization-time of flight-mass spectrometry (SELDI-TOF-MS).

Read on...

FSR Announces New T-shirt

Demonstrate your commitment to aiding in the fight to stop this devastating disease by wearing T-shirts featuring the Kick In to Stop Sarcoidosis message of FSR's annual education and awareness campaign!

This heavyweight cotton T-shirt features purple and red embroidery on a white shirt and is available in a range of adult sizes up to 2X.

Screen printed T-shirts in grey and black are also on sale at a special discounted price, but only limited quantities are available.

Order Now!

Researcher Feedback Requested - Biospecimen Survey

Because of their strong reputation for connecting top researchers with human biomaterials, in 2006, FSR formed an alliance with the National Disease Research Interchange (NDRI) to further accelerate the collection of human tissues for placement with disease researchers.

To facilitate this process, we have worked to promote tissue donation among sarcoidosis patients. Now, we are asking researchers to complete an online sarcoidosis tissue survey explaining which tissues are needed in research at the present time and in the near future. The survey will be available online through the end of August. NDRI, in consultation with FSR, will then compile and analyze the data to assist in new tissue procurements.

Researchers who are interested in receiving sarcoidosis tissues can review the Online Biospecimen Catalogue (OBC) available through the NDRI Web site. Patients who would like more information about tissue donation should Click Here.

Complete the Survey - Researchers Only

Sarcoidosis Clinical Trials

Clinical studies (sometimes called trials or protocols) are medical research studies in which people participate as volunteers and are one way of developing new treatments and medications for diseases like sarcoidosis. Clinical studies can also provide researchers information that may be an important first step toward developing a treatment. For example, research may show how the disease progresses or how it affects other systems in the body.

The FSR Web site contains a listing of current information on clinical research studies. Research studies typically provide free care to those who participate. In addition, studies at the National Institutes of Health (NIH) in Bethesda, land are free of charge to those who are eligible to participate and willing to receive treatment at the center. In some cases, travel expenses are reimbursed.

Before deciding to participate in a study, you should carefully weigh any risks against possible benefits.

Find a Trial

FSR Upcoming Events

This month, FSR is pleased to offer information about several important upcoming events planned by our supporters. Visit the Current Events Section of the FSR Web site for more information on these and other future events.

'Keeping It Real' Radio Show - August 22Dr. Marc Judson and will join patients to discuss sarcoidosis with Reverend Al Sharpton and Dr. Yael Varnado during this live broadcast. Click Here for stations and times or listen online via the Internet.

Golf in the Darc for Sarc (Denver) - September 7Organized by Kirk R. Mease, a neurosarcoidosis patient and golf professional, The Golf in the Darc for Sarc Glo Ball Tournament is an annual fundraiser to benefit FSR.

Hike for Lung Health (Chicago) - September 23Join other sarcoidosis patients and their families to walk as part of the official Team Sarcoidosis. Prizes will be awarded to walkers who raise the largest amount in pledges. Register Now.

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[Guest guest]

Goodie! The health hike is in Chicago. Maybe Oprah will see it or say something about it?? Hopegrannylunatic@...

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.

[Guest guest]

, I thought you & I could hitchhike to Chi-Town & enter the health wobble, er, hike. I'll bet we could get some pledges from our NS family here!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: FW: FSR Sarcoidosis Update (August 2007)--Second tryDate: Fri, 3 Aug 2007 23:26:39 -0700 (PDT)

Goodie! The health hike is in Chicago. Maybe Oprah will see it or say something about it?? Hopegrannylunatic (AT) yahoo (DOT) com

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.

More photos, more messages, more storage—get 2GB with Windows Live Hotmail.

[Guest guest]

Rosie You could bring your bike & I'll tie my wheelchair to it! LOLgrannylunatic@...

Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out.

[Guest guest]

, you can actually buy little trailers for them; would that work?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: FW: FSR Sarcoidosis Update (August 2007)--Second tryDate: Sat, 4 Aug 2007 20:39:38 -0700 (PDT)

Rosie

You could bring your bike & I'll tie my wheelchair to it! LOLgrannylunatic (AT) yahoo (DOT) com

Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out.

More photos, more messages, more storage—get 2GB with Windows Live Hotmail.

[Guest guest]

Rose The little trailers would work but I blew my "disposable cash" on fried chicken for the family reunion today! LOL grannylunatic@...

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.