Los Angeles people

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Los Angeles people

Postby Elizabeth » Tue Oct 21, 2014 7:15 pm

So we held our "awerness walk" last Saturday and with a turn out of 3 of us, I left disappointed but not defeated. I immediately started thinking about how we can do better, be more powerful, make a better impact and spread more awerness. We as a group face many challenges and it almost seems unfair that we have, often times, disabling conditions but we are also faced with raising awerness and finding a cure all while representing a rare disease...so we are essentially a small injured group trying to change medicine. All that said, we can do better than 3 affected members coming together in Los Angeles, a major metropolitan area with likely tons of affected people. Stay tuned for next year, I hope I'm feeling okay then and am able to fulfill my vision. If you are an LA member and want to help, email, pm me, or leave your info here. My goal is to try to reach the community better, reach some of the doctors, and build an awerness movement in our own communities. Help us work towards a cure.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: Los Angeles people

Postby vandy » Wed Oct 22, 2014 11:55 am

Sorry to hear about the turn-out. Such a shame.

I can feel your despair about the lack of interest. When my daughter and I organized our walk there was no one that showed up. You feel hopeless, but as you said, next year we will do better.

Stay positive and change will happen, because you Elizabeth make it happen.

Best wishes,

Henk :ugeek:
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Re: Los Angeles people

Postby Elizabeth » Tue Sep 22, 2015 5:46 am

Here we are again. I'm not exactly ready to "take on the world", but is anyone in SoCal up to walking with us in Malibu on October 18th? Message me, and I will forward you all the info. that Linda put together. We'd love to meet up and walk together!!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Location: Los Angeles

Re: Los Angeles people

Postby PhDiabla » Wed Jun 21, 2017 10:33 pm

Are you still doing walks in the Los Angeles area, Elizabeth? I was diagnosed a year and a half ago and I am in the Los Angeles area.
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Re: Los Angeles people

Postby Elizabeth » Thu Jun 22, 2017 7:17 pm

I answered your other post, but yes! There are others still trying to bring our LA people together. :)
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Location: Los Angeles

Re: Los Angeles people

Postby Elizabeth » Sat Jun 24, 2017 11:41 pm

I just received this email today on the upcoming events. PhDiabla, I forwarded you the entire email, but for everyone else...here's the latest from Kristen. Hope to see you all there! Hopefully more than 3 of us!!

Hello! My name is Kristen Lewis. I have been involved with Angioma Alliance for 5 years. I was diagnosed with the familial form of the illness 6 years ago when I had to have emergency surgery to remove a hemorrhaging lesion from my spinal cord 6 days after the birth of my daughter. Angioma Alliance has been so helpful to me personally but I have also been able to witness how instrumental the organization is in driving the search for a drug treatment. As a rare disease, truly every donation matters, so this year we are really stepping up our California fundraising efforts! CONTINUED ON NEXT POST.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Los Angeles people

Postby Elizabeth » Sat Jun 24, 2017 11:51 pm

Along with Linda Fuscher and Stephanie Alband, I am co-hosting 2 walks in the fall and I would love to share the information with you.
There are many ways for you to get involved!
First, you can register for a walk and attend!

The first walk will be on September 24 in Mission Viejo at Flo Jo Park. Some of you might know that Flo Jo died of complications related to cavernous angioma. Here is the link to register for this walk: WWW.TINYURL.COM/FLOJOWALK and here is the link to the facebook event page for this walk:FACEBOOK FOR OC

CONTINUED IN NEXT POST
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Posts: 1556
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Los Angeles people

Postby Elizabeth » Sat Jun 24, 2017 11:55 pm

The second walk will be held in Malibu on October 21st. Here is the link to register for this walk: WWW.TINYURL.COM/MALIBUANGIOMAWALK and here is the link to the facebook even page for this walk: FACEBOOK FOR MALIBU

A second opportunity would be to set up a team, invite friends, and fundraise for one of the walks. Instruction for how to do this can be found in the attached document entitled "Instructions to Register".

A third opportunity would be to join a committee and help with planning one of the walks! Committees are forming now and we are starting monthly calls for any and all volunteers.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Posts: 1556
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Los Angeles people

Postby Elizabeth » Sat Jun 24, 2017 11:57 pm

If you would like to join the next call, you can find the information here on facebook and the details are also here:

When: Tuesday June 27th at 2:00 p.m.
How:
FREE CONFERENCE CALL LINE
Dial In: 563-999-2090
Access Code: 604054
A fourth opportunity would be so sponsor one of the events or to help connect us with a sponsor! Sponsors can earn a logo on our t-shirts for as little as $1000. Attached is information about sponsorship for both events.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Posts: 1556
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Los Angeles people

Postby Elizabeth » Sat Jun 24, 2017 11:59 pm

A fifth opportunity would be to help us promote these events! You can share any of the included links on social media and/or print the attached flyers and advertise!
A sixth opportunity would be to solicit for donations for the silent auctions for these events. You can present the attached letter to any potential donors. All in-kind donations are tax deductible.
Thank you so much for your continued support of Angioma Alliance! Please let me know if you have any questions!

Sincerely,
Kristen Lewis
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Posts: 1556
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles


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