Re: Foundation for Sarcoidosis Research Patient Conference

[Guest guest]

Hi Rose and the whole group,I am a lurker in the group. I have found the group very helpful!!! Thank you!A little history about me. I am a RN and I live near Chicago. About 6 1/2 years ago, I was diagnosed with breast cancer. I had chemo, breast removal surgery and radiation. The chemo left me with bad neuropathy. I have tingling and pain in my feet, hands, lower back and rt hip pain. After a year I thought I shouldn't have all this pain. I then had many additional tests and finally a pet scan all were consistent with metastatic (cancer) disease. I had spots in my lungs, back and spleen. I had a mediastinosopy (cut in the neck) to biopsy lymph node between my lungs and a bronchoscopy to check my

lungs. It wasn't cancer, it was definitely sarcoidosis. My doctors believe that I have sarcoidosis also in three spots on my spine. No one wants to biopsy it as I am stable, the pain is stable and my back MRIs are unchanged in the last six years, so have gone no further than to a pain med specialist. The meds I currently take are Lyrica, Wellubutrin XR, Lidoderm patches, Mobic and Vicodin as needed. I see that a lot of sarcoid treatment involves chemo so that may be why my sarcoid is stable. I have a pulmonologist but I have no real symptoms in breathing. He is very interested in sarcoidosis and willing to see me as needed. I continue to see an oncologist and surgeon yearly.I am interested in learning more about the conference. Carol From: mamadogrose@ hotmail.comTo: neurosarcoidosis@ yahoogroups. comSubject: FW: Foundation for Sarcoidosis Research Patient ConferenceDate: Wed, 21 Jan 2009 23:37:26 -0500 Wanted to make sure everyone was aware of this conference. I would love to go, but don't see any way I can do it. I hope some of you can make it. We didn't have the annual fall conference in Indianapolis this past year; I guess with Kay Pullen's death, no one was up to organizing it. I missed getting together with folks; these meetings are great opportunities. Rosita Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 From: indysarcoid@ comcast.netTo: ;Subject: Foundation for Sarcoidosis Research Patient ConferenceDate: Wed, 21 Jan 2009 14:41:32 -0500 Greetings Everyone, Just

a short note to give you a heads up on a patient conference sponsored by the Foundation for Sarcoidosis Research. Here is the tentative information regarding this conference: Conference Date: March 24, 2009 Registration Fee: $60.00 Conference Location: Embassy Suites Airport-Convention Center, North ton 5055 International Boulevard, North ton, SC 29418 Accommodations: A block of rooms has been reserved with a conference rate of $139.00 per room (two double beds plus one pull-out sofa or one king plus one pull-out sofa). This rate includes breakfast and a Manager¢s Reception each day. For reservations call the hotel directly at . Please reference: Sarcoidosis Conference. Topics of the conference will be: Disease Overview Current Theories about the Cause of

Sarcoidosis Pathogenesis & New Directions for Treatment Treatment Debate: Corticosteroids vs. Alternative Therapy Questions & Answers Quality of Life for Coping with a Chronic Illness Providing Successful Support to Patients & Peers FSR Coalition to Stop Sarcoidosis Networking Reception This looks like it would be an excellent conference to attend. Those who are interested in attending may e-mail me and I will forward your address on to the Foundation for Sarcoidosis Research and they will mail you an conference brochure that will feature more in-depth information about the conference. As always if you have any questions, please don't hesitate to call me at . Take Care Because I Care, Robbie

[Guest guest]

Hi, Carol. Wow--what a story you have. Since you live near CHicago, are you familiar with FSR (Foundation to Stop Sarcoidosis)? It's a leading organization in the fight against sarc, based in Chicago. The website is www.stopsarcoidosis.org. On the homepage under news events, click current events on the drop-down menu. You'll see the SC conference, as well as other events coming up. You can also email Robbie Darden, who sent the original message. Her email address is indysarcoid@.... She will then contact FSR for you.

FSR has partnered with other lung health agencies for the last two years in a fundraiser, The Hike for Lung Health. Most of the walkers are in Chicago, but there are "virtual" hikers all over the world. I live about 4 hours from Chicago, in north-central Indiana. I've walked one mile, along with some family & friends, both years. I'm thinking about going to Chicago for the Fall 2009 event, if I can get somebody to go with me.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 Windows Live™: E-mail. Chat. Share. Get more ways to connect. See how it works.

[Guest guest]

Hey carol

Wow, it makes you kind of opening your eyes and heart after hearing your story.

As with Rose I have thought about the fall walk. I live north of Wisconsin Dells now but was raised in Oak Lawn, many years ago. I have family down there yet so it would be easy for me to come down for that. where by Chicago do you live. I am nosy..what can I say.

My prayers are with you hoping you have a multitude of pain free days and nights.

Jackie

Foundation for Sarcoidosis Research Patient ConferenceDate: Wed, 21 Jan 2009 14:41:32 -0500

Greetings Everyone,

Just a short note to give you a heads up on a patient conference sponsored by the Foundation for Sarcoidosis Research. Here is the tentative information regarding this conference:

Conference Date: March 24, 2009

Registration Fee: $60.00

Conference Location:

Embassy Suites

Airport-Convention Center, North ton

5055 International Boulevard, North ton, SC 29418

Accommodations:

A block of rooms has been reserved with a conference rate of $139.00 per room (two double beds plus one pull-out sofa or one king plus one pull-out sofa). This rate includes breakfast and a Manager¢s Reception each day. For reservations call the hotel directly at . Please reference: Sarcoidosis Conference.

Topics of the conference will be:

Disease Overview

Current Theories about the Cause of Sarcoidosis

Pathogenesis & New Directions for Treatment

Treatment Debate: Corticosteroids vs. Alternative Therapy

Questions & Answers

Quality of Life for Coping with a Chronic Illness

Providing Successful Support to Patients & Peers

FSR Coalition to Stop Sarcoidosis

Networking Reception

This looks like it would be an excellent conference to attend. Those who are interested in attending may e-mail me and I will forward your address on to the Foundation for Sarcoidosis Research and they will mail you an conference brochure that will feature more in-depth information about the conference. As always if you have any questions, please don't hesitate to call me at .

Take Care Because I Care,

Robbie

[Guest guest]

Maybe some of us can meet up & walk together?Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: shadowme810@...Date: Thu, 22 Jan 2009 19:13:52 -0600Subject: Re: Foundation for Sarcoidosis Research Patient ConferenceHey carolWow, it makes you kind of opening your eyes and heart after hearing your story. As with Rose I have thought about the fall walk. I live north of Wisconsin Dells now but was raised in Oak Lawn, many years ago. I have family down there yet so it would be easy for me to come down for that. where by Chicago do you live. I am nosy..what can I say. My prayers are with you hoping you have a multitude of pain free days and nights.Jackie Foundation for Sarcoidosis Research Patient ConferenceDate: Wed, 21 Jan 2009 14:41:32 -0500Greetings Everyone, Just a short note to give you a heads up on a patient conference sponsored by the Foundation for Sarcoidosis Research. Here is the tentative information regarding this conference: Conference Date: March 24, 2009Registration Fee: $60.00Conference Location:Embassy SuitesAirport-Convention Center, North ton5055 International Boulevard, North ton, SC 29418 Accommodations:A block of rooms has been reserved with a conference rate of $139.00 per room (two double beds plus one pull-out sofa or one king plus one pull-out sofa). This rate includes breakfast and a Managerʼs Reception each day. For reservations call the hotel directly at . Please reference: Sarcoidosis Conference. Topics of the conference will be:Disease OverviewCurrent Theories about the Cause of SarcoidosisPathogenesis & New Directions for TreatmentTreatment Debate: Corticosteroids vs. Alternative TherapyQuestions & AnswersQuality of Life for Coping with a Chronic IllnessProviding Successful Support to Patients & PeersFSR Coalition to Stop SarcoidosisNetworking Reception This looks like it would be an excellent conference to attend. Those who are interested in attending may e-mail me and I will forward your address on to the Foundation for Sarcoidosis Research and they will mail you an conference brochure that will feature more in-depth information about the conference. As always if you have any questions, please don't hesitate to call me at . Take Care Because I Care,Robbie Windows Live™: E-mail. Chat. Share. Get more ways to connect. See how it works.

[Guest guest]

Hi Rose,

I am very interested in the Conference, so would like more info. as well as any info re. fund raisers, walks,etc.

Thanks, (recently diagnosed with neurosarcoidosis)

To: neurosarcoidosis@...Sent: Thursday, January 22, 2009 9:37:37 PMSubject: RE: Foundation for Sarcoidosis Research Patient Conference

Maybe some of us can meet up & walk together?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis@ yahoogroups. comFrom: shadowme810@ verizon.netDate: Thu, 22 Jan 2009 19:13:52 -0600Subject: Re: Foundation for Sarcoidosis Research Patient Conference

Hey carol

Wow, it makes you kind of opening your eyes and heart after hearing your story.

As with Rose I have thought about the fall walk. I live north of Wisconsin Dells now but was raised in Oak Lawn, many years ago. I have family down there yet so it would be easy for me to come down for that. where by Chicago do you live. I am nosy..what can I say.

My prayers are with you hoping you have a multitude of pain free days and nights.

Jackie

Foundation for Sarcoidosis Research Patient ConferenceDate: Wed, 21 Jan 2009 14:41:32 -0500

Greetings Everyone,

Just a short note to give you a heads up on a patient conference sponsored by the Foundation for Sarcoidosis Research. Here is the tentative information regarding this conference:

Conference Date: March 24, 2009

Registration Fee: $60.00

Conference Location:

Embassy Suites

Airport-Convention Center, North ton

5055 International Boulevard, North ton, SC 29418

Accommodations:

A block of rooms has been reserved with a conference rate of $139.00 per room (two double beds plus one pull-out sofa or one king plus one pull-out sofa). This rate includes breakfast and a Managerʼs Reception each day. For reservations call the hotel directly at . Please reference: Sarcoidosis Conference.

Topics of the conference will be:

Disease Overview

Current Theories about the Cause of Sarcoidosis

Pathogenesis & New Directions for Treatment

Treatment Debate: Corticosteroids vs. Alternative Therapy

Questions & Answers

Quality of Life for Coping with a Chronic Illness

Providing Successful Support to Patients & Peers

FSR Coalition to Stop Sarcoidosis

Networking Reception

This looks like it would be an excellent conference to attend. Those who are interested in attending may e-mail me and I will forward your address on to the Foundation for Sarcoidosis Research and they will mail you an conference brochure that will feature more in-depth information about the conference. As always if you have any questions, please don't hesitate to call me at .

Take Care Because I Care,

Robbie

Windows Liveâ„¢: E-mail. Chat. Share. Get more ways to connect. See how it works.

[Guest guest]

Hi all,I wasn't aware of the group being located in Chicago. I will have to check it out.I live in Elmhurst which is 16 miles straight west of Chicago. I received my breast cancer treatment and was diagnosed with sarcoidosis at RUSH.I will have to check out the day of the walk and let you know. I am working as a volunteer RN for the Chicago Breast Cancer 3-Day around Aug 8th. I also am watching my son run his 3rd Chicago Marathon in October.Thank you all for your responses! CarolTo: neurosarcoidosis Sent: Thursday, January 22, 2009 6:27:32 PMSubject: RE: Foundation for Sarcoidosis Research Patient Conference Hi, Carol. Wow--what a story you have. Since you live near CHicago, are you familiar with FSR (Foundation to Stop Sarcoidosis) ? It's a leading organization in the fight against sarc, based in Chicago. The

website is www.stopsarcoidosis .org. On the homepage under news events, click current events on the drop-down menu. You'll see the SC conference, as well as other events coming up. You can also email Robbie Darden, who sent the original message. Her email address is indysarcoid@ comcast.net. She will then contact FSR for you. FSR has partnered with other lung health agencies for the last two years in a fundraiser, The Hike for Lung Health. Most of the walkers are in Chicago, but there are "virtual" hikers all over the world. I live about 4 hours from Chicago, in north-central Indiana. I've walked one mile, along with some family & friends, both years. I'm thinking about going to Chicago for

the Fall 2009 event, if I can get somebody to go with me. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 Windows Live™: E-mail. Chat. Share. Get more ways to connect. See how it works.

[Guest guest]

To: Neurosarcoidosis Sent: Friday, January 23, 2009 8:19:20 AMSubject: Re: Foundation for Sarcoidosis Research Patient Conference

Hi Rose,

I am very interested in the Conference, so would like more info. as well as any info re. fund raisers, walks,etc.

Thanks, (recently diagnosed with neurosarcoidosis)

From: Rose <mamadogrose@ hotmail.com>To: neurosarcoidosis@ yahoogroups. .comSent: Thursday, January 22, 2009 9:37:37 PMSubject: RE: Foundation for Sarcoidosis Research Patient Conference

Maybe some of us can meet up & walk together?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis@ yahoogroups. comFrom: shadowme810@ verizon.netDate: Thu, 22 Jan 2009 19:13:52 -0600Subject: Re: Foundation for Sarcoidosis Research Patient Conference

Hey carol

Wow, it makes you kind of opening your eyes and heart after hearing your story.

As with Rose I have thought about the fall walk. I live north of Wisconsin Dells now but was raised in Oak Lawn, many years ago. I have family down there yet so it would be easy for me to come down for that. where by Chicago do you live. I am nosy..what can I say.

My prayers are with you hoping you have a multitude of pain free days and nights.

Jackie

Foundation for Sarcoidosis Research Patient ConferenceDate: Wed, 21 Jan 2009 14:41:32 -0500

Greetings Everyone,

Just a short note to give you a heads up on a patient conference sponsored by the Foundation for Sarcoidosis Research. Here is the tentative information regarding this conference:

Conference Date: March 24, 2009

Registration Fee: $60.00

Conference Location:

Embassy Suites

Airport-Convention Center, North ton

5055 International Boulevard, North ton, SC 29418

Accommodations:

A block of rooms has been reserved with a conference rate of $139.00 per room (two double beds plus one pull-out sofa or one king plus one pull-out sofa). This rate includes breakfast and a Managerʼs Reception each day. For reservations call the hotel directly at . Please reference: Sarcoidosis Conference.

Topics of the conference will be:

Disease Overview

Current Theories about the Cause of Sarcoidosis

Pathogenesis & New Directions for Treatment

Treatment Debate: Corticosteroids vs. Alternative Therapy

Questions & Answers

Quality of Life for Coping with a Chronic Illness

Providing Successful Support to Patients & Peers

FSR Coalition to Stop Sarcoidosis

Networking Reception

This looks like it would be an excellent conference to attend. Those who are interested in attending may e-mail me and I will forward your address on to the Foundation for Sarcoidosis Research and they will mail you an conference brochure that will feature more in-depth information about the conference. As always if you have any questions, please don't hesitate to call me at .

Take Care Because I Care,

Robbie

Windows Liveâ„¢: E-mail. Chat. Share. Get more ways to connect. See how it works.

[Guest guest]

The previous walks have been about the 3rd week of September. You can walk one mile or three miles. The first year I took my scooter as backup, but didn't need it. This past year the batteries were down & I really could have used it! I had to sit down several times to rest & get my breath. In the Photos section, in the Rose's World Album, there is a photo of my walking companions--my oldest daughter, her 2 kids plus a teen friend, my son & a friend, my niece with her 2 kids & a girlfriend. We also had 3 dogs & a cat along! Another photo is of my cat "Dude", who rode the first half mile & walked the rest of the way on his little red leash, also a photo of my son & daughter & grandkids. It wore me out, but I really enjoyed it. To find the photos, click one of the links at the bottom of this or any other group message (such as the member database); then click Photos on the left side of the page. Find my album; the Hike for Lung Health pics are near the end. Maybe that will inspire you to plan for the 2009 hike!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 From: Jon@...Date: Fri, 23 Jan 2009 07:50:06 -0800Subject: Re: Foundation for Sarcoidosis Research Patient Conference

Hi all,I wasn't aware of the group being located in Chicago. I will have to check it out.I live in Elmhurst which is 16 miles straight west of Chicago. I received my breast cancer treatment and was diagnosed with sarcoidosis at RUSH.I will have to check out the day of the walk and let you know. I am working as a volunteer RN for the Chicago Breast Cancer 3-Day around Aug 8th. I also am watching my son run his 3rd Chicago Marathon in October.Thank you all for your responses! Carol

From: Rose <mamadogrose (AT) hotmail (DOT) com>To: neurosarcoidosis Sent: Thursday, January 22, 2009 6:27:32 PMSubject: RE: Foundation for Sarcoidosis Research Patient Conference

Hi, Carol. Wow--what a story you have. Since you live near CHicago, are you familiar with FSR (Foundation to Stop Sarcoidosis) ? It's a leading organization in the fight against sarc, based in Chicago. The website is www.stopsarcoidosis .org. On the homepage under news events, click current events on the drop-down menu. You'll see the SC conference, as well as other events coming up. You can also email Robbie Darden, who sent the original message. Her email address is indysarcoid@ comcast.net. She will then contact FSR for you. FSR has partnered with other lung health agencies for the last two years in a fundraiser, The Hike for Lung Health. Most of the walkers are in Chicago, but there are "virtual" hikers all over the world. I live about 4 hours from Chicago, in north-central Indiana. I've walked one mile, along with some family & friends, both years. I'm thinking about going to Chicago for the Fall 2009 event, if I can get somebody to go with me.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

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