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Re: [Devics-spectrum] 2011 Patient Day
November 13, 2011 by Lea
Comments (0)
Well said Gracie!So much has been done on our behalf and we need to do our part too. This is where Guthy Jackson needs our help:
1. Accelerated Cure Repository: do blood draws annually! Longitudinal draws are so important. Martha and her team will come to you! Also a sample when you're having a flare (before treatment) is something new they are asking for that would be helpful - but without compromising your access to treatment. Call Martha Mann to see if it can be done in your area. Get a plan together before you have another flare. Atlanta has a draw center and will now be a part of my "plan" when I have a flare - on my way to infusion or plex - getting a "flare" draw done for the repository!
2. Advocacy and Awareness: Dan Behne has materials/brochures for us to use in our community to raise awareness and funds. Although we've been blessed by Victoria and Bill's generous support - we can also do our part. Be creative - leverage events for MS, ie tradeshows for MS. I will approach the Natl MS Society in Atlanta (I'm still a member!) to see how we can raise awareness for NMO. Remember most of us were MS patients - it would've made a difference for me to have learned about NMO earlier.
I'm just amazed at the positive energy at the conference - Drs about the progress being made and patients full of hope. It was the best therapy!!!
Sent on the Sprint® Now Network from my BlackBerry®
-----Original Message-----
From: "Grace" [email address removed]
Sender: [email address removed]
Date: Sun, 13 Nov 2011 09:17:24
To: [email address removed]
Reply-To: [email address removed]
Subject: Re: [Devics-spectrum] 2011 Patient DayHi Jim,
I so agree. Whenever I think of the tremendous research effort that
Victoria and Bill have launched, it takes my breath away. Six and a half
years ago at the time that I became ill there was absolutely nothing out
there for NMO patients. It took me weeks to find just one other patient
with NMO, and that was due to dear Tim who saw one of my posts at an
internet site and contacted me. Even then, it was still a very lonely and
frightening disease.At Patients Day there were *new* faces, that I've known for years, people
that I have communicated with via phone or email. New faces, but old
friends. There were lots of happy tears.Victoria and Bill have changed the entire face of NMO research. The NMO
community has gone from nearly zero research, to heights that were
unfathomable six and a half years ago. To say that we as a community are
grateful is a vast understatement. Whenever I listened to Victoria speaking
from the podium, all I could think was, *There she is. A shaker and a mover
of obstacles. A Mom just like me.* A Mom who has gone above and beyond for
her beautiful daughter and has embraced the entirety of the NMO community as
well. What a phenomenal woman she is, and what an amazing opportunity she
provided all NMO patients by giving us Patients Day. We love you Victoria.Gracie
_______________________________________________
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Re: [Devics-spectrum] 10/11/2011 Updated NMO Patient Day Attendee List
October 12, 2011 by Lea
Comments (1)
Lea & James Long - Atlanta, GA
-----Original Message-----
From: Robert Hunter [email address removed]
To: devics-spectrum [email address removed]
Sent: Wed, Oct 12, 2011 10:59 pm
Subject: Re: [Devics-spectrum] 10/11/2011 Updated NMO Patient Day Attendee List
Thanks, Tracy. Bob and Marlene Hunter, Menlo Park, CASent from my iPad
On Oct 12, 2011, at 1:10 PM, Tracy Owens <
> For those that want to, I'lll put your City, State, and Country on the list
too. Or just the State and Country. I've started with Cherie and Lynne.
>
> Tracy
>
>
Re: [Devics-spectrum] Our Kendall's Latest Update.
October 3, 2011 by Lea
Comments (0)
So glad to hear from you Kendall and that you're feeling better. Praying hard for you my friend!!
Love,
Lea
Sent on the Sprint® Now Network from my BlackBerry®
-----Original Message-----
From: getrhythm@swagents.com
Sender: devics-spectrum-bounces@guthyjacksonfoundation.org
Date: Mon, 03 Oct 2011 13:57:18
To: <devics-spectrum@guthyjacksonfoundation.org>
Reply-To: devics-spectrum@guthyjacksonfoundation.org
Subject: Re: [Devics-spectrum] Our Kendall's Latest Update.
Hi all
I am finally off oxygen as of sat. Yesterday I was moved from the hospital to a transitional care facility. Hopefully I can regain some strength. Thanks for all the prayers I went from not being able to breathe to my lungs being clear. Praise God' that was scary. So, I don't know if I will go back on the cellcept as Dr. Cree wanted to switch me to Gilenya a secondary progressive MS drug which should help with slowing the nerve degeneration.
Just sharing as we all contine to learn from each other plus there is no other support like what we get from our group.
I love you my NMO family!
Kendall
_______________________________________________
Spectrum is the new home of Devic's Support
View posts on Spectrum: http:/
To change your Spectrum options or unsubscribe to this email list please visit http:/
Read Frequently Asked Questions: http:/
Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org
_______________________________________________
Spectrum is the new home of Devic's Support
View posts on Spectrum: http:/
To change your Spectrum options or unsubscribe to this email list please visit http:/
Read Frequently Asked Questions: http:/
Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org
Re: [Devics-spectrum] Insurance Query for new NMO patient.
September 27, 2011 by Lea
Comments (0)
Celtic - individual conversion policy
Rituxan (600mg) 2x per year.
------Original Message------
From: gracepdm@atlanticbb.net
Sender: devics-spectrum-bounces@guthyjacksonfoundation.org
To: devics-spectrum@guthyjacksonfoundation.org
ReplyTo: devics-spectrum@guthyjacksonfoundation.org
Subject: [Devics-spectrum] Insurance Query for new NMO patient.
Sent: Sep 27, 2011 7:59 PM
For those of you who get your Rituxan covered by your insurance, what companies do you use? This information will help a new NMO patient who has initially been denied by her insurance. They are currently in the process of appealing the denial. Input please.
Grace
_______________________________________________
Spectrum is the new home of Devic's Support
View posts on Spectrum: http:/
To change your Spectrum options or unsubscribe to this email list please visit http:/
Read Frequently Asked Questions: http:/
Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org
Sent on the Sprint® Now Network from my BlackBerry®
_______________________________________________
Spectrum is the new home of Devic's Support
View posts on Spectrum: http:/
To change your Spectrum options or unsubscribe to this email list please visit http:/
Read Frequently Asked Questions: http:/
Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org
Re: [Devics-spectrum] OUR KENDALL---AN UPDATE.
September 24, 2011 by Lea
Comments (0)
On my knees praying.
I'm so heart broken and worried to hear Kendall is so sick.
She is the first NMO patient I met at the first conference in 2009 right after my DX - and an awesome support I so needed - a true lifeline!
Sent on the Sprint® Now Network from my BlackBerry®
-----Original Message-----
From: gracepdm@atlanticbb.net
Sender: devics-spectrum-bounces@guthyjacksonfoundation.org
Date: Fri, 23 Sep 2011 20:42:04
To: <devics-spectrum@guthyjacksonfoundation.org>
Reply-To: devics-spectrum@guthyjacksonfoundation.org
Subject: Re: [Devics-spectrum] OUR KENDALL---AN UPDATE.
Yes, Kendall is seriously ill right now and her family is most concerned. Right now things are about the same, but as soon as I receive an update from her husband or mom, I'll be sure to post.
Kendall is very dear to me, as she is to many. She has been with Tim (now deceased) and I since the earliest days of Devic's Support. Over the years she became a much loved friend to both of us.
Please continue to pray for her well being.
Grace
_______________________________________________
Spectrum is the new home of Devic's Support
View posts on Spectrum: http:/
To change your Spectrum options or unsubscribe to this email list please visit http:/
Read Frequently Asked Questions: http:/
Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org
_______________________________________________
Spectrum is the new home of Devic's Support
View posts on Spectrum: http:/
To change your Spectrum options or unsubscribe to this email list please visit http:/
Read Frequently Asked Questions: http:/
Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org
A Rare Approach to a Rare Disease
