Renee Spears's Discussions

FREE TIME FOR PEOPLE WITH LIMITED MOVEMENT
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Started this discussion. Last reply by Laurie Rae May 26.

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Renee Spears's Page

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Lori Sames left a comment for Renee Spears

August 16

Lori Sames left a comment for Renee Spears

June 10

Laurie Rae replied to Renee Spears's discussion 'FREE TIME FOR PEOPLE WITH LIMITED MOVEMENT'

Hi Renee, nice to meet you and happy to be here. My daughter Tanya has limited use of one hand and her other hand still functions a little. I know you say you can't be taken out anywhere but if you have a patio/deck to be outside on sometimes, maybe…

May 25

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At 4:13pm on August 16, 2009, Lori Sames said…: Renee.
Please contact me, or ask your parents to contact me either by phone of email. lorisames@yahoo.com
Phone: 518-383-9053 A GAN researcher in France would like skin and blood samples sent to her from GAN patients. I rarely have time to visit the forum, so please either call or email. Thank you! Lori Sames, Hannah's mother and Executive Dir., Hannah's Hope Fund for GAN

At 12:10am on June 10, 2009, Lori Sames said…: Renee,
I regret I never find the time to visit the forum. Magaen told me when you joined and I'm sorry it's taken me so long to reach out. Please know we are working tirelessly to find a treatment for GAN. Have you had your GAN gene sequenced to see what type of mutation you have? Did Dr. Kevin Flanigan (univ. of Utah) do your gene sequencing? At what age did you become wheelchair bound? Please call, or have a family member call me at 518-275-5359 My email: lorisames@yahoo.com

At 4:52am on July 27, 2008, Matt Sames said…: Renee, I wish I had some great tips to cure your boredom, but I don't. One idea is to help us find as many GAN patients and families as possible. We are trying to build our network through our website, www.hannahshopefund.org so we can grow our strength as an organization, and find a cure. Talk soon, Matt

At 2:02pm on July 1, 2008, Magaen Bates said…: The GAN Symposium is a scientific discussion about GAN. There will be several physicians there discussing GAN so that everyone understands it better and discuss what needs to happen so that a treatment can be developed.

At 1:20am on June 20, 2008, Magaen Bates said…: I love the picture of you and your caregiver and Cuddles.

At 9:48pm on June 19, 2008, Renee Spears said…: This is me with my caregiver, Susan

At 9:11pm on June 19, 2008, Mary Pizzurro said…: This is my email address marypizzurro@yahoo.com in case you need to write to me.

At 3:50pm on June 19, 2008, Renee Spears said…: Susan, from this group is my caregiver.

At 1:28pm on June 17, 2008, Mary Pizzurro said…: Joe will be 22 in July. He has been on a full-time vent for about 4 years now. Mike just turned 25 and he does have a trache but does not use any other assistive devices. Mike's email is hot_wheelz_mike@yahoo.com and Joe's is pokermanjoey@yahoo.com. I'm glad you joined the forum. Do you have any siblings. I have four children. My daughters are 19 and 18 years old.

At 12:37pm on June 17, 2008, Magaen Bates said…: My email address is: magaenbates@yahoo.com

I would love to see a picture of your family.

I am in the eastern time zone. It is 12:30 here.