"Donate what you Can to cure GAN."

Renee Spears's Comments

Comment Wall (13 comments)

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.

At 12:12pm on June 17, 2008, Magaen Bates said…: Hi. I can completely understand how you must feel about the school and job issues. It is tough to find a balance between what you want to do and what you are able to do. I struggle with that and my son is only 10. I think it is normal to feel that way. Lottyn loves to play on the computer also. He can do just about anything on here. He does email, myspace, games, and surfs the net for kids stuff.

Are you an only child or do you have brother and sisters? What do your parents do for a living, do they stay home with you or do you have a nurse? I stay at home with the kids and my husband works.

At 11:50am on June 17, 2008, Magaen Bates said…: You are very welcome. Cuddles is precious. We live in Tifton, Georgia. It is a very small town with only about 10,000 people. We have a terrior named Maggie. We rescued her from the pound about 3 years ago when she was 1 year old. We have a cat names Taco Bell and a new baby kitten named Wichet. Lottyn is almost 10 yeard old. He likes to play Play Station, swim, watch movies, and play dress up. Him and his brother and sister are always dressed up in something. What do you like to do in your spare time? Did you enjoy school?

At 8:48pm on June 16, 2008, Magaen Bates said…: Hi. Welcome to the hannah'shopefund forum. We are so glad that you have joined our "GAN family." We are working so hard to raise awareness and funding for research. I am so glad to hear that you have such a supportive family. Your poodle is precious. Please tell your parents to join the forum as well. We would love to share the news with them too.

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