Help Julia End Her Tremors

$43,967 of $50k goal

Raised by 245 people in 3 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 6
Posted by Claudia Siegel
3 days ago
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Big update from Julia Connor!
KCRA-TV (NBC) will air my interview on Saturday, March 25th on their morning and evening news segments. Once we have links to the online version, we will notify you via an update.

The procedure date is April 21 (also our wedding anniversary!) at Swedish Medical Center in Seattle. We have booked their "Inn" for the prior dates when the necessary preliminary procedures - CT scans, MRI's - brain mapping etc. take place. Listen to this: they welcome Luna Blanca to be part of this adventure. She and I feel better already.

We are so close to our funding goal - just $6500 short. We are hoping the Saturday publicity will help us achieve it. Spread the news - tell your friends!

P.S. There is additional media attention news on the near horizon - stay tuned... Things are becoming very REAL in the Essential Tremor world.

Luna Blanca
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Update 5
Posted by Claudia Siegel
26 days ago
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A message and update from Julia Connor:

Dear Friends,

What a topsy-turvy month February has been!

First it brought unwelcome news that, without explanation, Stanford Hospital has put the Ultrasound Procedure “on hold” for an indefinite period of time. My heart sank, of course, and I became concerned that some undisclosed ‘clinical trouble’ was behind the delay. Eventually, I ascertained that surgery was proceeding nicely (for those who can pay) at New York Presbyterian, the University of Virginia, and Seattle’s Swedish Medical Center — all three having participated in the trial studies that resulted in FDA approval. Inadvertently, this disclosed to me that Stanford University had not participated in trials, meaning that as a ‘pay as you go’ customer, I might well have been their first surgical subject. Hence, I am delighted to let you know that I will be undergoing surgery instead at the hands of Dr. Ryder Gwinn, Swedish Medical Center in Seattle, on Friday, April 21st! This requires me to be in place by Monday April 17th for preliminary procedures. Jim and I plan to drive, leaving Sacramento on the 13th. Yes, this is to save airfare but also, and more importantly, because we want to linger in the beautiful Northwest for a few days post-surgery.

The twists and turns of the past month, its sudden revelations, its calls from “out of nowhere” bearing crucial information, the interest of KCRA/NBC-Sacramento, and many other ‘slightly weird synchronisities' have informed me that there are more Beings at steerage here than may appear. I now feel that my job is to simply remain open and alert. Money has come in in surprising amounts from unexpected (and sometimes unknown) persons. Donations of $5.00, $8.00 and $25.00 have brought me to tears. Large donations have blown back my hair which, by the way, gets shorter & shorter as my head will be shaved for surgery.

I guess the other important news to relay is that KCRA/NBC-Sacramento will broadcast our interview sometime shortly after March 9th. It will include a section with Dr. Casey Halpern from Stanford discussing the procedure. We will do everything we can to alert you in advance and will be sure to send out a link. If you missed The Sacramento Bee's feature article about me and Essential Tremor on February 10, it is still available here:

http://bit.ly/2lJnMU2

If you have been to the GoFundMe site recently, you know that we are just over $41,000 — $9000 short of our ultimate goal. We are hoping that the television interview broadcast will generate the remaining necessary funds, as the cost of surgery must be paid fourteen days in advance.

Personally, I would like you to know that it will take me some time to process and to share with you what this campaign has meant to me. Essential Tremor truly wrought change in my life, but the experience of this campaign — your interest, concern, support and generosity — have marked me forever.

Yours,
Julia
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Update 4
Posted by Claudia Siegel
1 month ago
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Dear Friends,

Our campaign to receive treatment for her Essential Tremor got a boost from the Sacramento Bee's Insight Section today. In this article http://www.sacbee.com/news/local/health-and-medicine/article131814679.html writer Claudia Buck does an excellent job describing the challenges posed to anyone who suffers from this condition. Please share this update with your friends and family. We reached 70% of our campaign goal this week. The goal post is in sight!

Our thanks go to Ms. Buck who conducted the interview with Julia at ClayArtStudio814 on Alhambra Boulevard last week, along with photojournalist Manny Crisostomo.

Every day, little by little...Your generous contributions and your support though spreading the word are appreciated beyond measure.

Every day, little by little...
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Update 3
Posted by Claudia Siegel
2 months ago
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Dear Contributors and Friends,

First some great news...I have just received a $5000 grant toward my treatment! This puts us at the two-thirds milestone in just over one month since our campaign began on December 12th. I am immensely grateful for this assistance.

In other news, my sister, Nancy, passed away early on the 15th as the first rays of sun entered her room. It has been a long vigil and I feel blessed to have had the support that enabled me to attend her transition. This has been a beautiful, life-affirming, formative experience. Final observances will be held this week. I will return home on the weekend. Once back in the studio, I will make the urn to hold her ashes.

I am filled with gratitude and think eagerly about the future...the ability to write again, thoughts of a coming book, the ability to draw. Thank you for your support, your generosity, and your confidence in me.

More and more news is coming forth about this ultrasound procedure for Essential Tremor. Treatment for additional conditions are in trial stage. Already treatment for Bone Metastases, Prostate Cancer and Uterine Fibroids have received FDA approval. Please, if you know someone suffering with any of these conditions, let them know there is hope. Here is a three minute video demonstrating startling results.

This Patient's Tremors Finally Stilled
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Read a Previous Update
Ray Tatar
2 months ago
2
2

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
1 month 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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$43,967 of $50k goal

Raised by 245 people in 3 months
Created December 12, 2016
Claudia Siegel  
on behalf of Julia Connor
OR
$25
Olivia Raynor
13 hours ago
WC
$50
Wayne Cook
14 hours ago

I know its going to work

AC
$40
Andrea Carlisle
1 day ago

I'm so happy to hear about this treatment and wish you all the best.

$25
Molly Fisk
1 day ago

How did I miss this campaign?!? Thanks to Ruth Ghio for mentioning it, and all love to you, Julia, and your 10 fingers, your palms, your wrists, and your heart.

RH
$25
Rob Horton
1 day ago
MS
$25
Mari Scott
1 day ago
CC
$100
Chris Coake
2 days ago

Good luck, Julia!

JA
$20
Judy Anderson
2 days ago
AB
$200
Alexandra Baldwin
2 days ago

Go mom!!!

$5
Loraine Webb
3 days ago

Donating an (affordable) pittance again. And sharing, sharing, sharing. Blessed journey you lovebirds! xoxoxo

Ray Tatar
2 months ago
2
2

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
1 month 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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