I’m so, so happy for you guys!
Woohoo! Congrats – glad we could pitch in!
Exciting news over at the blog … we launched the GETTY OWL FOUNDATION … a nonprofit dedicated to helping families and fighting SMA!
Posted to my Facebook page. Congratulations. I hope the foundation does really well.
It’s very admirable that you can think of others with all you’re going through. Good luck!
StG
There is a marvelous Woman Who is head of Califorinia’s Handicapped division who is now in her 50’s She has had Muscular Spinal Dystrophy all her life, She has had 2 marriages and bore 2 healthy children and is now a Grandmother. She is very intellegent, graduated with honors from the University of Arizona. She can only use her one finger and needs her husband to feed, dress etc. her. I have known her since she was in High School. A person who is a honor to know..she never complains.
Her name is Laural Horiup I am not sure of the spelling of her last name. but she would give you good advice about your daughter.She has an office in Sacramento. A person everyone shuld get to know. A true hero and inspiration to anyone with the priviledge to meet her.
I couldn’t find her by Googling that name. Can you PM me her contact info?
We are always looking for people who may be able to advise us on how to improve our daughter’s life. We are also looking for people who are willing to support the cause and find a cure.
Thank you!
Try Laurie Hoirup, Chief Deputy Director. State Council on Developmental Disabilities.
OK thanks!
Her Name is Laurie(she uses it this way)
Chief Deputy Director State council of Developement Disabilities
Phone no 916-324-5939
fAX 916 443-4957
EMAIL-laurie.hoirup@scdd,ca.gov
Tell her Karen’s mom gave you her name.
Thank you!
You are welcome and I am sure she will give you good advice since she has the same disability. She will tell you all people have some disability, and can tell you how her wonderful Mom and step Dad helped her live a good life.
She is an inspiration to anyone who meets her!
I emailed and got an “out of office for an extended period of time” response. Hope she’s ok.
She does travel a lot. She does lecture to families etc. to help people understand and help them with children( and even adults) to cope with this disability. I will check with Karen, they correspond a lot and she would be kept up on Laural’s condition. Her husband would contact Karen if there was anything wrong with Laurie.
If she’s travelling, she still might check her email or her facebook account once in a while.
This is her FB: Redirecting...
I will contact her and see what she says, I have her personal email.
Find her on: laurieslegacy.com.
ok thanks!
monavis, I sent you an email.
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