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« on: September 10, 2010, 07:54:50 pm » |
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Fundraiser for ALR... LIMITED to 20 participants to add a charm to LupusMCTD 2010 Flight of the Hope Bracelet. MUST SIGN UP Today!!! last day to sign up is Monday Sept 13 or till all 20 participants have been added. WHAT: Your name is on a list for this special bracelet to travel to your home for you to personalize it with a charm. Then mail it within 24 hours to the next person on the list. By October 23 it should return back to me, where it be put up on FB for open bid..highest bidder wins this custom made bracelet made by LupusMCTD patients! Bracelet proceeds will be donated directly to ALR. Be looking for more details on http://www.LupusMCTD.com/ or here on Facebook with Kathy Patterson and Kim Nault. When participants are done, please share your moving experience on our group wall http://www.facebook.com/LupusMCTDFoundation#!/group.php?gid=230133614145&ref=ts PLEASE share photos on FB with you wearing the bracelet as well as post your story! 2010 Flight of the Hope Bracelet |
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 I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.  www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #1 on: September 11, 2010, 01:30:11 pm » |
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2010 Flight of the Hope Bracelet
The Lupus MCTD Foundation is very excited about launching the 2010 Flight of the Hope Bracelet !
In agreeing to participate, we ask that each participant commit to the following:
A ) That the mailing list remain confidential among the participants
B) Bracelet chain is silver, so please keep to the color scheme when adding your charm
C) Participants are asked to get their charms before the bracelet arrives at their homes
D) That the bracelet is in your possession for no more than 24 hours
E) After the bracelet is mailed to the next person, we ask that you go to the Face Book Lupus MCTD group page, under the Discussions tab/ 2010 Flight of the Hope Bracelet and:
type a personal message about how it felt to participate in this project
how it felt to have the bracelet in your possession
the reason/meaning behind your particular charm
explain how the project made you feel bonded with other Lupus patients in America
a brief personal message of hope to others living with Lupus.
We encourage participants to take pictures wearing the bracelet and upload them into the photo album 2010 Flight of the Hope Bracelet on the Lupus MCTD group page. It will be exciting to see the bracelet evolve as it makes it rounds!
It is encouraged to reuse the original shipping box for the bracelet, as it will adequately protect the bracelet while keeping the shipping costs minimal.
Any questions should be directed to either Kathy or Kim via the Face Book PM system.
It is our deepest hope that the Flight of the Hope Bracelet becomes an annual project and a significant symbol of the bonds between Lupus patients.
Thank You and Keep the Light Going,
Kathy A. Patterson, Founder/Owner Lupus MCTD Foundation
Kim Nault, Administrative Assistant Lupus MCTD Foundation
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #2 on: September 13, 2010, 01:10:36 pm » |
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List of Hope Bracelet Participants as of Monday, September 13, 2010  
1) Sue Myrick (Massachusetts)
2) Tracy Bennett (Texas)
3) Kristel Goodspeed-Correa (Illinois)
4) Melissa Bishop Wise (Indiana)
5) Sylvia Chavez Weitzel (California)
6) Tesa Perry (Washington, DC)
7) Erica Wheaton (Ohio)
8) Faith Dean (Texas)
9) Allison Wisenbaker (Florida)
10) Pat Thompson (Alabama)
11) Maria Basulto Ortega (New Jersey)
12) Tracey L. Flenner (Ohio)
13) LuAnne Trivelli (South Carolina)
14) Cheryl Cerisano (New York)
15) Sy Robinson (New York)
16) Katie Ruddy (Ohio)
17) Suzanne Amir (Michigan)
18) Chrystal Burdette (South Carolina)
19) Patty Jones (Florida)
20) Kimberly Ann Possible (New York)
Thank you to all of our participants!!!
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #3 on: September 17, 2010, 03:02:09 pm » |
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http://redefiningmyselfwithlupusandms.blogspot.com/Be sure to visit Kim Naults site for more information on Lupus & MS
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #4 on: September 20, 2010, 12:49:24 pm » |
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #5 on: September 29, 2010, 02:02:57 pm » |
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UPDATE for FRIDAY Oct1, 2010....
Now at Sy Robinson's wrist!
REMINDER ~In agreeing to participate, we ask that each participant commit to the following:
A ) That the mailing list remain confidential among the participants
B) Bracelet chain is silver, so please keep to the color scheme when adding your charm
C) Participants are asked to get their charms before the bracelet arrives at their homes
D) That the bracelet is in your possession for no more than 24 hours
E) After the bracelet is mailed to the next person, we ask that you go to the Face Book Lupus MCTD group page, under the Discussions tab/ 2010 Flight of the Hope Bracelet and:
type a personal message about how it felt to participate in this project
how it felt to have the bracelet in your possession
the reason/meaning behind your particular charm
explain how the project made you feel bonded with other Lupus patients in America
a brief personal message of hope to others living with Lupus.
We encourage participants to take pictures wearing the bracelet and upload them into the photo album 2010 Flight of the Hope Bracelet on the Lupus MCTD group page. It will be exciting to see the bracelet evolve as it makes it rounds!
It is encouraged to reuse the original shipping box for the bracelet, as it will adequately protect the bracelet while keeping the shipping costs minimal.
Any questions should be directed to either Kathy or Kim via the Face Book PM system.
It is our deepest hope that the Flight of the Hope Bracelet becomes an annual project and a significant symbol of the bonds between Lupus patients.
Thank You and Keep the Light Going,
Kathy A. Patterson, Founder/Owner Lupus MCTD Foundation
Kim Nault, Administrative Assistant Lupus MCTD Foundation
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« Last Edit: October 01, 2010, 08:40:30 am by Adminஐﻬ »
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #6 on: October 14, 2010, 10:25:10 am » |
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UPDATE for Thursday Oct 14, 2010 ..."Kimberly Ann Possible I just got the bracelet! I have added my charm and it is on its way to MAria Ortega in NEw Jersey! I added a sterling silver helm of a ship to represent my favorite quote " smooth seas never lead to skillful sailors" as it is a constant phrase i tell my self when things get roough- also i want it to symbolize how regardless of our diagnosis and what not you are in control, Not lupus so take the helm and steer your ship!  putting pics up now too my loves ♥"http://www.facebook.com/topic.php?topic=15951&post=130725&uid=230133614145#post130725 LINK TO OUR FACEBOOK GROUP
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« Last Edit: October 14, 2010, 10:25:46 am by Adminஐﻬ »
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #7 on: October 21, 2010, 11:22:55 am » |
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OCT 21, 2010-
I've received confirmation, the bracelet has landed in New Jersey!
Sista Maria says the bracelet is I quote her "BEAUTIFUL"
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« Last Edit: October 21, 2010, 11:24:38 am by Adminஐﻬ »
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #8 on: November 02, 2010, 12:41:34 pm » |
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Received a spoon charm via mail today from fellow patient Sylvia Weitzel.
Her letter she hand wrote is as follows:
"Hello my "Lupie" friends. We have been given this burden called Lupus.I find it comforting to know, that I am included with all of you living with this disease.
I pray that one day we weill alll be cured. We will never have to go through any more pain or loss.
The only good thing that has come of this is...I have met many wonderful friends. You all, "get it" You understand. I am sending this charm to go alongside the rest.
It is a spoon to go along with Christine Miserandino Donato's "Spoon Theory".
Now we always have one spoon in reverse. I wish you all love, pain free days, frienship and a long life to enjoy.
Yours in Friendship:
A Lupus Survivor
Sylvia Weitzel
California
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #9 on: November 30, 2010, 12:51:10 pm » |
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« Last Edit: November 30, 2010, 12:51:46 pm by Adminஐﻬ »
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #10 on: February 18, 2011, 06:13:17 am » |
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AN UPDATE.. the bracelet went *missing* back in Dec 2010..
It arrived at Kristel Goodspeed-Correa February 17, 2010
"I am very honored and excited to be participating in the Flight Of Hope bracelet. Its very beautiful and it represents the special bonds that we the patients ourselves have with one another.
The charm I chose, is a key with a heart on top with pretty gemstones. I chose it because the heart is the key to the cure for Lupus and hope comes from the heart. The colorful gemstones resemble are own uniquenesses, but united together to find the cure.
My Message of Hope to others living with Lupus is to keep the faith. They WILL find a cure someday, its just a matter of time. Lupus has afforded me many wonderful opportunities that I would not have had otherwise, so try to look for that silver lining. Everything in life happens for a reason, including Lupus. Perhaps its because we have the power to make a difference. Lupus has made me find strengths in myself I never knew I even had. I have been able to meet some phenomenal people from all over the world and I count them among my blessings."-Kristel Goodspeed-Correa
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« Last Edit: February 18, 2011, 06:19:35 am by Adminஐﻬ »
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #11 on: March 07, 2011, 03:21:47 pm » |
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It has arrived at the next home safely! |
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #12 on: March 14, 2011, 03:24:50 pm » |
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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« Reply #13 on: March 27, 2011, 10:34:52 am » |
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From : LuAnne Raffa Trivelli
It felt amazing to receive the bracelet. Something came over me when I saw all the beautiful charms. I thought about each charm and wondered about the person who placed it on the bracelet. I thought about how each charm was so different yet each had the same meaning. We are all fighting this disease and how different it is for each one of us. I went to choose my charm with my daughter, Lauren. She was as into finding the perfect charm as I was. Right now we are waiting on blood test results to find out if she has Lupus. My heart is breaking for her. She has been having a lot of crazy symptoms. It was her choice to put the wolf charm on the bracelet.
She has been with me every step of the way. I thank God that my children were older (not babies) when I first got sick. For that I am thankful. I have often said I don't know how I would do it if they were babies. I know so many of you have young ones at home, my heart goes out to you. I can only imagine how difficult it is for you.
Thank you for allowing me to be a part of this.
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #14 on: March 27, 2011, 10:35:34 am » |
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From: Tracey FlennerCan't tell you how excited I was to get the bracelet in the mail! I was on the list of the first bracelet which never made its way around so, this time, it's like winning the lotto  After I opened the envelope and saw the bracelet, I immediately was curious to read about the meanings behind the charms so that was the first thing I did -- search for the stories behind them. We need more!
Adding the peace symbol was important to me because, not only is peace important in life itself but it is especially important to find peace within oneself when dealing with a chronic illness. Patience has been especially hard to come by when it comes to having an autoimmune disease -- not only for me, but for those around me. I hope this charm will be a reminder to the wearer to find a few moments of peace every day.
Reading the messages on here where everyone is asking where the bracelet is ... what better to unify us in a positive way? [Because we know for damn sure that lupus isn't positive!] The good thing about this mad disease lupus is that it brings people together with their unique stories of how lupus has affected them. I'm so grateful to have "met" the people I have as a result of having that positive ANA! And, sharing the flight of the bracelet only adds to that feeling of community. Thank you, Kathy and Kim, for allowing me to participate! On a side note, I was VERY excited to see that someone I've "known" since the days of AO-Hell Journals is who gets the bracelet next ... LuAnne ! ♥ ! ♥ ! ♥ [going in the mail this afternoon!]
~*~*~*~ REMEMBER to BREATHE! ~*~*~*~
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Adminஐﻬ
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« Reply #15 on: March 28, 2011, 05:48:18 pm » |
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the bracelet just arrived in Iva, SC with Chrystal Brock Burdette.
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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« Reply #16 on: October 26, 2011, 08:23:28 am » |
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 Dear Friends of LupusMCTD,
After one year of the 2010 Flight of the Hope Bracelet being successful in flight visiting lupus mctd patients all over the United States who graciously participated by adding charms and writing their words of support for one patient to another... THANK YOU from the bottom of my heart!
YOU are the ones who made this awareness campaign be what it is is! Once it left Alabama, it never made it to Faith's home.
It is officially lost.
While I continue to hold the only known charm and handwritten letter from Sylvia, I will return it to her.
I am closing out the LupusMCTD Facebook page and group.
Any information I can still continue to post for support and information to "Pay It Forward" I will do so on here until this domain name expires.
Thank you to all who has been here from the beginning on November 11, 2005 to present.
LupusMCTD will be no more.
I'm toast.. done.
Time to start living my life, not life live for me.
Special heartfelt thanks to Kim for being my right hand lady through all this... you are one of a kind special sister of the heart who totally understood the mission to help support, educate and bring much needed awareness to invisible illnesses.
Wishing You Well,
Kathy Patterson-Founder LupusMCTD
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients |
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Lupus/MCTD Awareness