Help Julia End Her Tremors

$51,580 of $50k goal

Raised by 296 people in 4 months
Claudia Siegel
on behalf of Julia Connor
 ROSEVILLE, CA
Four years ago poet and visual artist Julia Connor developed Essential Tremor, a neurological condition that has taken away the use of her hands, incapacitating her art-making and art teaching in all the fields in which she was once so productive. She can no longer write, draw or paint, and her last stand: ceramics and sculpting, is under attack as the condition worsens. Of course it also affects her daily life: not being able to steady a fork or a glass of water enough to reach her mouth.  Art and teaching were Julia’s main source of income.

Until recently, there was no cure for Essential Tremor.  It can be inherited, as in Julia’s case, specifically targeting the hands, but only when they engage in a focused activity such as writing, painting, or eating—then the hand shakes uncontrollably. The voice and head can also be affected. Now, there is now a non-invasive procedure for essential tremor! Approved by the FDA this past summer, Exablate Neuro Surgery  (targeted sonar energy) has proven immediately effective at reducing hand tremors up to 70% and is being performed at Stanford Medical Center at a cost of upwards of $40,000. Hence the appeal!

Those who know Julia know she has given widely to the community.  She has taught poetry in the California State Prisons, created a three-year project that gave a voice to homeless and marginalized women, taught exceptional young writers at a Summer Institute for the Arts, offered free courses to seniors teaching them how, through poetry, to re-vision and tell their life stories, as well as for twenty + years, offered workshops and master classes, mentoring less experienced poets, both in Sacramento and at numerous workshops throughout the region.  She served as Poet Laureate of Sacramento from 2005 – 2009 where she devised programs that took place in libraries, museums, classrooms and coffee shops.  

Adaptive computer devices and voice technologies have been useful to Julia for e-mails and assisting others in editing their work, but do not allow her to engage the creative source from which her own work is generated – the journal.  Mind to hand has always been Julia’s creative entry. Her forty years of journals are a testament.

Let’s give Julia back her hands.
Thanks from her husband and devoted friend,
Jim Anderson, Theater Artist
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Update 10
Posted by Claudia Siegel
4 days ago
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Update from Julia in Seattle:

Dear Friends,

As in "hurry up and wait," my treatment date has been pushed into the future. A shock! I know. Jim and I have been reeling from it. We've had an advanced medical mini-course here at Swedish. It turns out the conformation and thickness of the skull are crucial for targeting the brain with ultrasound. Each individual is different and the protocol for the imaging is highly specialized. My skull, it turns out, is on the thick side. (Save the jokes, please.) Because of this, extra precaution is warranted in order to not overheat the surrounding areas of the brain causing potential serious damage. Everyone--the entire surgical team here at Swedish Hospital--is disappointed but advises not going ahead at this time. We were down to the wire and it was all systems go until this turned up. I am, of course, very disappointed but appreciate the respect and caution, even though it puts everything in a state of flux. Deep Brain Stimulation (DBS), which involves incision into the skull, remains an option, although not my preferred one at this time. So, we await further guidance and until then cannot proceed. Many are collaborating to find the best path forward including the Insightec folks (manufacturer) and the Essential Tremor Education Center in Florida. Holding ground while staying open to the unexpected seems to be the order of the day. I think I am up to it. This was an abrupt and shocking turn in the road that for the moment certainly took my breath away but in no way do I feel defeated. Help me, if you can, by trusting, as I do, that it is all for a good end. I cherish your caring.

Love, Julia
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Update 9
Posted by Claudia Siegel
7 days ago
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Update re Julia's upcoming treatment from husband, Jim: Dear friends and family, We arrived in Seattle on Saturday evening and checked into the "Inn" at Swedish Hospital (5th Floor), which is really converted hospital rooms, and tiny ones at that. But after moving all the furniture around, hanging some material over the generic hospital cheerful prints, and making a little altar, it is really very comfortable and cozy. We have a great view looking south to the Seattle Harbor and the weather, which from the fifth floor is dramatic cloud panoramas mixing rain and sun,depending. Turns out it is a good choice to be here at the Inn. We had meetings with two separate doctors on "the team" on Monday, who gave us detailed and sobering information on the procedure and the alternatives. After hearing it all, we are reassured that the focused ultrasound is the way to go, and the doctors, who also provide all the known alternatives, agree that this would be the best choice in Julia's case--and that doing nothing to alter the degree of the tremor would be foolish. Friday's procedure is projected to last five hours. This morning she began the preliminary tests, Catscan, blood, Mersa, chest x-ray, urinalysis, EKG--she is certainly getting a complete physical!. Being right here it is easy to get to and from the appointments and to have time and private space nearby to retreat to. After hospital hours, we've had a good chance to browse Seattle bookstores, cafe-restaurants, and street-life since arriving. On Easter as we parked on Capitol Hill district, we met a cheerful, not to mention decked-out, Easter LGBTQ parade on the sidewalk, it was sunny in Seattle and everyone was out celebrating. Tonight we will have dinner with Julia's stepdaughter, Laura May . Tomorrow we meet with Dr. Ryder Gwinn, who will head the surgical team on Friday. Following that appointment, it's haircut time. (Do you think I should get a buzz cut in sympathetic support?) Insight Tech, the manufacturer of the focused ultrasound equipment, has managed to get approval to videotape the procedure to promote the equipment and the procedure; Julia may become a YouTube star and we may have images to share. Being here is making all of this "real", this morning Julia said, "It is always more sobering to be looking down the barrel of the gun, than to be talking about it." Yet, she remains confident that we are on the best path possible. Feel free to share. And feel free to e-mail me if you have any specific questions. Julia is focusing on the appointments and keeping relaxed and focused for Friday's procedure during which she must be in the MRI but awake and participating with the doctors as they locate the exact pinpoint that will relieve the tremor. It is estimated to take five hours.

Best, Jim
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Update 8
Posted by Claudia Siegel
13 days ago
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Update from Julia to Friends, Contributors, Well-wishers, Loved-ones:

It seems our appointment has arrived!

Jim, Luna, and I will be leaving Sacramento this Thursday to begin making our way to Seattle. In Seattle we will be in residence at "The Inn at Cherry Hill" (a non-residency hospital Inn on the 5th floor of Swedish Medical Center) from the 17th through the 22nd. My surgical procedure is scheduled for the 21st with Doctor Ryder Gwinn presiding. It is possible, though not yet certain, that portions of the procedure will be video taped. If so, you will see them in a future post-op update. Hope so.

Everyone I run into of late asks how I feel. Do I have confidence? Am I nervous? Am I afraid? Do I think "it" will work? It's funny but my thoughts do not focus on success of the procedure per se. Although I go forward in full hope, my thoughts repeatedly turn to the lessons this experience has already brought forward. How changed I am! How grateful! How humbled! How emboldened! How turned toward true center -- as if your love, concern, recognition, care -- be it, in some cases that of 'strangers' -- has somehow 'tuned' my radar. Although I move forward in the hope and belief that this procedure will restore to me the use of my right hand, I can already say that nothing is, or will ever be, the same.

Alert: On April 15th, KCRA will broadcast a fuller version of my interview with KCRA's Toni Valliere at 6:30 pm on "Common Ground" following the 6 pm news. I won't be able to catch the show but I hope some of you will. There will be a link on the KCRA web page that you can send on to others.

My friend, the miracle known as Claudia, will be in touch with me throughout and will hold forth in my absence, keeping you informed.

We are, as I write, inches from our goal. Time to think outside the box, play the long-shot. Do what you can.

All my love,

Julia

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Update 7
Posted by Claudia Siegel
28 days ago
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In case you missed it (or as the folks on Twitter say, "ICYMI" here is a link to Julia Connor's story which aired Saturday on KCRA-NBC. We are so close to our campaign goal and treatment is just three weeks away! Share, share, share! Heaps of thanks from Claudia Siegel, campaign manager!

http://bit.ly/2orRoCT
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Read a Previous Update
Ray Tatar
3 months ago
3
3

OK Folks, Julia is one of our great poet-laureates BUT many of you don't know that she was one of the founding administrators of the California Arts Council (CAC). While that job did not raise her financial status, it was a heroic challenge to push a state political afterthought from a scrabbling nearly penniless agency into existence to become a nationally competitive support council that would serve millions of people in schools, prisons and ghettos as it does now. That early money to the arts brought Boomer Artists out of the backstreets to the foreground of "city pride" By the time I came to the CAC, Julia was "legend." All of us felt that she had helped lay the groundwork for our agency.

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Alan Springwind-Smith
2 months ago
1
1

That link to the Bee article is broken. Here is a good link...http://www.sacbee.com/news/local/health-and-medicine/article131814679.html

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Jeanmarie Bishop
4 days ago

Love to you both - standing by. Anything you need, please let us know. So sorry to hear about the setback, but love, love, love.

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Jeanmarie Bishop
6 days ago

I love you!!! I'm THRILLED to read this wonderful message from you, Jim, and to see that you've exceeded your fundraising goal. Much love, as always. ♥ jm

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$51,580 of $50k goal

Raised by 296 people in 4 months
Created December 12, 2016
Claudia Siegel  
on behalf of Julia Connor
SR
$250
Susan Reynolds
2 months ago
2
2

We met briefly during a class at clay art studio. Blessings to you talented lady!

$1,000
Anonymous
2 months ago (Offline Donation)
2
2
$1,000
Jeffrey Spahn
4 months ago
2
2
SO
$50
Susan Orr
4 months ago
2
2

oh how i wish i could do more! so happy you have found a non-invasive way to quiet these tremors julia!

EM
$50
elizabeth F. morgan
13 days ago
1
1

Yeah! almost there. thoughts and prayers with you. Love you Elizabeth F. Morgan

CM
$65
Cecile Martin
13 days ago
1
1

My heart goes with you Julia!

$100
Laurie Brooks
26 days ago
1
1

Julia is one of my favorite creatives and I'm pleased to contribute and share my love and care for her well-being and ability to create.

LD
$50
Lucille Lang Day
27 days ago
1
1

Hope the new treatment will work well for you!

KP
$50
Kirsten Petersen
27 days ago
1
1

Please get well and take up your wonderful work again

BS
$100
Betty Staley
28 days ago
1
1

See you with your journal brings back such rich memories. Sending you love and hope for your treatment to help. You've given so much to so many.

Ray Tatar
3 months ago
3
3

OK Folks, Julia is one of our great poet-laureates BUT many of you don't know that she was one of the founding administrators of the California Arts Council (CAC). While that job did not raise her financial status, it was a heroic challenge to push a state political afterthought from a scrabbling nearly penniless agency into existence to become a nationally competitive support council that would serve millions of people in schools, prisons and ghettos as it does now. That early money to the arts brought Boomer Artists out of the backstreets to the foreground of "city pride" By the time I came to the CAC, Julia was "legend." All of us felt that she had helped lay the groundwork for our agency.

+ Read More
Alan Springwind-Smith
2 months ago
1
1

That link to the Bee article is broken. Here is a good link...http://www.sacbee.com/news/local/health-and-medicine/article131814679.html

+ Read More
Jeanmarie Bishop
4 days ago

Love to you both - standing by. Anything you need, please let us know. So sorry to hear about the setback, but love, love, love.

+ Read More
Jeanmarie Bishop
6 days ago

I love you!!! I'm THRILLED to read this wonderful message from you, Jim, and to see that you've exceeded your fundraising goal. Much love, as always. ♥ jm

+ Read More
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