Ellen Degeneres Show and ALS guests

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blitzc

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I just watched Eric and Amanda Stevens on the Ellen Show sharing Eric's fight with ALS and the advocacy they are performing. Ellen donated a huge sum of money to the couple about 6 months ago, and today the Shutterfly company donated $100,000 to them for a house down-payment.

So, no disrespect to any person or family dealing with this disease, but couldn't Ellen Degeneres and Shutterfly have donated that $100,000 to the greater ALS Association or perhaps this couple's local chapter? Then more folks would benefit from their generosity. More people getting respite care, home modifications, equipment, etc.
 

KimT

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I understand what you're saying, Cathy. Some people don't trust ALSA to use the money wisely.

I'm just glad ALS is being highlighted on a show that is so highly regarded and so many people watch.
 

blitzc

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I'm just glad ALS is being highlighted on a show that is so highly regarded and so many people watch.
Totally agree!
 

lgelb

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Though he only played a couple of years in the NFL, the minimum salary there is such that I would tend to think Eric would be better off financially at this point than many of his fellow PALS, who are not getting such gifts.

I do not begrudge anyone support, but I don't think the word "ALS" (or cancer or Alzheimer's, for that matter) should supersede normal considerations about who can most benefit from it.
 

EricInLA

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I did not see the Ellen show but I'm very aware of Eric. He has been quite visible, particularly in Southern California, with his media campaign. I felt a connection with him because we are both pALS on the young side (though he's much younger than me), we're both from LA, and we both graduated from UC Berkeley. And we're both Eric. I don't begrudge him for his media tour. Everyone has their own way of dealing with this tough diagnosis, and he's doing his thing. I think he is increasing awareness of the disease, and I know he is publicly advocating for faster access to drugs such as Nurown. The merits of that are a separate topic, but he feels strongly about it and I like that he's doing his part to increase awareness, even if the financial aspect redounds to him more than the ALS community generally.
 

blitzc

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EricinLA,
I feel so strongly as well for anyone who can share the news of ALS and bring necessary awareness particularily in Congress. My issue is the amount of money he is being given by organizations when so many PALS are struggling to get basic needs that their insurance isn't providing. Think of the number of families who could benefit from 1/100th of that $100,000. And with just $1,000 imagine the modifications (door handles, ramps, grab bars), equipment (wheelchairs, rollators, bed rails), and medical bills (bipap, radicava or other meds, therapy) that could be provided or the time to give a caregiver a much needed few hours off a week.
 

EricInLA

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It's a fair point! I too would rather see that money being distributed around more broadly. But I also think if Eric and Amanda don't exist, Ellen and Shutterfly wouldn't be spending 100K to help anyone with ALS. They are doing this because Eric showed up and it's good publicity for them. It's just too bad Eric is not taking the Team Gleason approach where the ALS community benefits more broadly. Or that Ellen couldn't also make a parallel contribution to an ALS cause.
 

Lkaibel

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I’ll take helping any PALS with anything, but it would have been nice for Ellen to make a contribution to The Gleason org or ALSA. Who knows, perhaps she has.
 

Scotiaspirit

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I do not begrudge any pALS getting financial help. but having financial help given collectively would help more people, many who are in desperate need of financial respite from this disease than perhaps to an individual pALS. Eric's wife gave a heartfelt speech on xTeds talk platform and reached many people, sending a message that needs hearing by so many. Their story is our story in so many degrees of similarity. Hoping 2020 will be a year where many new treatments find their way to be tested safely and with due diligence.
 

Dee Dee 0617

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I saw both appearances on YouTube. I don't view this as a "me" thing. I see ALS as a "we "thing. I have a different point of view on this. (Karen is my conscious ) I have zero tact, so I can see the letter symbol getting ready to light up. First his wife is so far out of her league. These people spoke before Congress and the Senate? Really? Ellen asked what she could do? The talking Barbie said "you can keep having us on your show ". This is what she came up with, to selfishly ride her own 15 minutes of fame. Nothing, not one mention of writing your representatives to keep ALS research at the forefront of their thoughts. Nothing, about including others afflicted, so they can see a well rounded representation of the degree of debilitation. Ellen goes on to ask about family support. They both said "oh yes, they have been wonderful ". He is walking, talking, and really looks pretty unaffected by the disease. I have watched people talk about redesigning bathrooms, hallways and doors, only to have the ALS diagnosed person die or degenerate to quickly. My boys were like ok Mom. Whatever you want. I was like, I will do what I can while I can and then I will do it differently. 3-5 years don't waste your money on modifications for me, give your time, effort, and money to someone who's trying to save us. These two people should not be speaking for us, they have nothing to say. Look up her recorded Congress appear she was star struck. Sorry Karen, but this really is me showing restraint.
 

Nikki J

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Did anyone see/ hear about the Survivor ALS connection? I don’t watch it and had never heard of these people but a current repeat contestant in raising money because the wife of a former contestant has ALS. The money raised will be split among ALSA, Mass General and CCALS which is a patient care organization. The current survivor person is matching the first 50 K
 

KarenNWendyn

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Yes. I shamelessly admit I’m a big Survivor fan. One of the former players, Jonathan Penner, is taking care of his wife who has ALS and is on a vent. She has FALS. A player in the current season is friends with this family. He broke down in tears while discussing it with another player on last night’s episode. He wants to raise ALS awareness.
Shortly after that scene, Survivor posted a website for donations to ALS research and there was a brief clip of Jonathan Penner and his wife. It was well done.

Here’s the website for those interested: http://protect-us.mimecast.com/s/1bJVCv2w2Ls7mQK7rhA6AMO?domain=cbs.com
 
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