Resources for teens with a parent with ALS?

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Turtals

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Joined
Dec 11, 2018
Messages
18
Reason
CALS
Diagnosis
12/2016
Country
US
State
MA
City
Newton
Being a teenager these days under normal circumstance is hard enough (for example, I have a senior and we are in the throes of college acceptances/rejections/etc.), but add having a parent with ALS to it....

Aside from therapy, what has worked for your kids?

Does a forum like this exist for kids of PALS?
Or any other resources that you/your kids found particularly helpful?
Or do any of you have kids that have/are going through this that would be able to find/provide comfort to others going through it?
 

Nikki J

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Mar 22, 2012
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8,907
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
You might want to look here https://www.hopelovescompany.org/

Their main thing is the summer camp for which registrtion starts in January. You may get some leads browsing the site.
 

lgelb

Forum Supporter
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Nov 5, 2009
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8,458
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Lost a loved one
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00/0000
Country
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WA
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Seattle
My son, who is now 36, dealt with my husband's Marfan syndrome (an often-fatal genetic disorder)/many surgeries throughout his childhood, and later ALS as an adult. He has helped teens/20-somethings here before and is always happy to do so. Anyone is welcome to let me know if you would like to pass on Sean's contact info to any of your kids.

Best,
Laurie
 
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