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Laurie Botwin Female Amherst, NY United States: Favorite

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Deletion of exon 51

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Carrier Moms

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New York Families

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Laurie Botwin's Discussions

Petition for Deflazacort FDA approval

Started this discussion. Last reply by Paul Thomas Feb 2, 2009. 14 Replies 0 Favorites

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I am Ben's Mom

Profile Information

About my family:: Ben is 5 1/2 and was diagnosed with MD on November 15, 2008. I have another son, Mason, age 8, and two daughters, Michelle age 17 and Myra age 15. We live near Buffalo, NY.

Name(s) of child(ren)/individual(s) with Duchenne:: Ben

Age(s) of child(ren)/individual(s) with Duchenne:: 4-6

City:: Amherst, ny

Laurie Botwin's Blog

working mom?

Posted on February 1, 2009 at 2:24am 5 Comments 0 Favorites

Are you a working mom? Would anyone want to post what they do, marital status, etc.? I am in an interesting place with work and was wondering how all of the other parents manage this. I work full time, carry the health insurance and am separated. At some point I will need to be home for Ben more than I am now (I work 12 hour night shift) and am not sure where I'm headed.

A quick poll?

Laurie

Petition for Deflazacort FDA approval

Posted on December 12, 2008 at 1:24pm 2 Comments 0 Favorites

I found this while searching the web for information on Deflazacort. I wanted to post the link to this petition here so that others may sign it and send it along to anyone you know so we can really make this a HUGE drive. I am currently trying to contact the originator of the petition and so far have not had any luck. I will pick up where he left off if I cannot track him down. Everyone, please have a look at what Adam wrote and then sign it if you feel comfortable. I was number 124 and by… Continue

Learning

Posted on December 10, 2008 at 4:25am 3 Comments 0 Favorites

Tomorrow is Ben's first neuromuscular clinic appointment. I made a list of questions to ask this doctor. Funny thing is, I don't expect any answers. We have been told that our local hospital is not the place to seek care. We couldn't get an appointment for the better place until April and won't go to Cincinnati until March. I feel like PPMD has been my "clinic". I have learned so much here. I have learned that I need to be the vocal minority to ensure Ben gets what he needs. I have learned that… Continue

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At 2:13pm on September 30, 2011, Anita Ballow said…: Hello,- we are hosting an event called "A Night to Shine", on Thursday, October 13th at the Hauptman Woodward Inst, in Buffalo. We would like to invite you and your family to attend. We are reaching out to all the families in the area in order to raise awareness in our community. Our website is http://www.suneelslight.org/, and if you are interested, please contact me.

At 10:40am on November 10, 2010, Suzanne Desmond said…: PS I started a group on this website call Western New York Families, including myself there are currently 6 members. Hope you can join us. Suzanne :)

At 10:38am on November 10, 2010, Suzanne Desmond said…: Hi Laurie, Hope all is good with you. Just writing to say hello & to pass on some information that I think would be helpful to you as it has been for me. There are a couple of groups here in the Buffalo area that I would like to suggest to you.
The Independence Foundation ~ www.theindependencefoundation.org
Suneel's Light Foundation ~ www.suneelslight.orgThese both may be found on Facebook as well. God Bless, Suzanne :)

At 2:44pm on August 26, 2009, Suzanne Desmond said…: Hi Laurie,
I know I have not spoken to you in awhile & I hope all is well. I wanted to let you know that I agree with the Kuller family. I went to see Dr. Wong two weeks ago & wished I had gone sooner. If you are thinking about whether to see her or not just go, she is worth every minute. I have decided not to go back to Rochester. I am seeing Dr. Wong once a year & going to try to do follow up visits here in Buffalo. I also wanted to let you know I volunteer with Gliding Stars Adaptive Ice Skating Program. We teach Children & Adults with mental & physical challenges how to ice skate & we have a show every year at the Amherst Pepsi Center. Elizabeth O'Donnell, founder & President has two rinks Hamburg Ice Arena & Hide Park. My son Francis who has DMD & Autism is apart of the Program, we skate at the Hamburg Ice Arena. I feel it has been very beneficial to him. Just wanted to pass this information onto you. The season starts in October. If you would like more information on Gliding Stars go to glidingstars.org or just ask me. God Bless, Suzanne

At 10:28pm on July 14, 2009, Shawn Jessica and Joshua Arndt said…: Hi Laurie,
Hope everything is going well. I was wondering if you were interested in getting the boys together this summer??

At 2:34pm on May 7, 2009, ewh said…: I just posted on your husbands page as well. My father in law lives in williamsville and was hoping to find some pepole to connect with to start some fundraising in the area. would you be interested?

At 9:15am on March 7, 2009, Allison & Whalen Kuller said…: Hey Laurie!

We have been going to Dr. Wong since 3/06. We love it. I have never had the level of confidence anywhere else. Just over the last 3 years I have seen the # of boys jump up dramatically. Everyone wants to see her!

By the way - we order from Masters (Blake has been on Deflaz. for 5 1/2 years) and have never once had a problem.

Hope things continue to go well for you all!

Allison

At 7:47am on March 7, 2009, Christine Piacentino said…: Hi Laurie,
Yes, Calcort is the same thing. Most families order their deflazacort from www.mastersmarketing.com The company that you order it from may require you to provide them with the presription from the doctor

At 8:27pm on March 6, 2009, Allison & Whalen Kuller said…: Hi Laurie - we just returned last night from Cincinnati. I wonder if we saw you??!!

Allison

At 12:21am on March 2, 2009, Traci Griffin said…: Hey Laurie,
Yes we will be there tomorrow coming in later that evening. We are staying at the Radisson. I hope we can meet before we leave. We don't have any appts on Wednesday so we may go to the Aquarium or the Children's Museum. Good luck!