ALS famlies with children....

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jodiodames

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Apr 12, 2011
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Lost a loved one
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NJ
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Titusville
Dear PALS,

My name is Jodi O'Donnell-Ames and I have started a non-profit for children of ALS families and am doing my best to get funding for resources for your children. I will be attending the International ALS Meeting in December in Chicago to present Hope Loves Company and am trying to find out statistics as to how many patients have children. These numbers will help my research and funding.

Does anyone have suggestions for finding out these numbers?

Thanks for your help.

If you need free books to help explain ALS to your children, I will be happy to help you.

Best,
Jodi O'Donnell-Ames
 
Jodi, do you have a f b acct? There are several groups there for pALS and cALS. Maybe you could set up a link to a survey regarding this on your page. I think you have a web site, if I remember correctly. Put the survey there and post link to all ALS related f b pages and all ALS forums, including P L M.

Somebody that is more savvy about f b could help you more than I.

Just an idea... Thank you for doing this!
 
When you say children, do you have a specific age group in mind? Our two kids were in college when their dad was diagnosed. One has graduated and working now, the other is a senior.
 
This was posted on FB a couple days ago If you need help getting in the group, please message me. As of now, there are 3 members.

"Kids of PALS and their parents is a new group that my daughter, Ashlin (9yo), recently started. I had tried to redirect her, suggesting that she start a group with students in her school, and she said, "Daddy, if I did that, I would be the only person in the group, because I am the only kid in my school with a dad who has ALS."

If you have a kid affected by ALS, who might be interested in participating in this group, please let me know and I will make sure that they (and you and their other parent) get invitations.

Thanks!

http://www.facebook.com/groups/419414424780125/

Kids of PALS and their parents
 
Great idea Jodi.
Thank you. (my kids are 9 and 16)
 
Jodi. Thank you!
I don't know how to help, but good luck!
Ours are 8 and 2.
 
My kids are now 13, 15 & 18... I was diagnosed 2 1/2 years ago.
 
So,eone might want to let Samantha know about it that knows her? She has two teens, I think.
 
great idea, thanks Brooke!
 
You kids are all at challenging ages (emotionally) to really understand what is going on.

I thank you for responding and I'm here for you and your children if you have any questions. I've raised three, all of whom have lost a parent to ALS ...

thanks again and bless you all!
 
I'd say ages to 21.... children and young adults. Thank you for responding. How are your young adults coping? I have a 21 year old also and she is just now grieving and she lost her mother at 10...
 
What a brave young girl! I wanted to do this on my website also... perhaps she would like to write something for my page or I can post her FB page on my site! How old is she?

My heart goes out to all of you!
 
my husband has been diagnosed with ALS about 2 months ago. my kids are 6 and 5.
 
My daughter is 19, now. She lost her grandfather(my dad) at age 5. Then I started having symptoms about 8 years ago. My sister is also affected (diagnosed 2 years before me) My father diagnosed in his 60's,sister in her 50's,me in my 40's.

My daughter does not like to talk much about it. She sometimes worries about contracting it, and has said so one time.

Great idea. Children can have so many fears and are unwilling or unable to voice them.
 
Hello,

My 4 year old was part of a graphing project in her pre-K class yesterday, she was the one displayed all alone with 4 siblings! She is part of a blended family so there's a 15 yr old sophomore, 2-18 yr old college freshmen and a 23 yr old.

She has fond memories of giving us all comfort when we sat the kids down for the 'it's ALS' discussion..."Mommy do you remember when I was giving hugs, back rubs and tissue?"

Thank you for your energy and dedication to this project.
 
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