“People can tell you to keep your mouth shut, but that doesn’t stop you from having your own opinion.”Anne Frank
PSA: This is my opinion. Caitlin’s opinion. Matt has advised me otherwise, but a lot of times I don’t follow his advice.
My feelings about ALSA. Let me preface this – I am talking about National ALSA. In my experience, local chapters are far more in tune with the community and, ours in particular, are wonderful organizations. Some have been so disgusted with National that they have tried to branch off from the organization, showing they care for the patients and their families exponentially more than National cares. If you missed that jab, let me put it more clearly. I do not believe National ALSA truly cares about the patients it is supposed to represent. I do not think National ALSA wants a cure for ALS. Part of the problem comes from the contradiction of any non-profit formed to help cure a terminal illness. If they are successful in their mission, they have essentially worked themself out of a job. However, on the flip side, imagine how in demand a board would be if they actually worked their butts off and were instrumental in curing a terminal illness! If they did not focus more on making their community comfortable as it died.
Because that’s another problem with ALS. Our pALS die too fast. The memory is short. The ones fighting now might not be around in 2 or 5 or 10 years to keep fighting and making a ruckus. Our loved ones are comfortable as they die, but that is not what our community wants. Our community wants a cure. And we want an organization that has the backbone to go out on a limb and fund the underdogs who are searching for a cure. Because you can bet our organization has the funds, but it most certainly lacks a backbone.
Take the above for example on what I mean. In 2017, Total Revenue versus Grants and Similar Amounts Paid was pretty close to even, off by $2.5M. In 2018, the difference between the two came close to $10M while the salaries increased by $500K. I do not have the time or energy to go searching for the 2019 tax returns because ALSA now makes it difficult to find anything relating to how they are spending their money, but I am guessing it doesn’t look too good for them. For the LIFE OF ME, I can not understand why an organization refused to help fund a Phase 3 Trial for an ALS therapy – the first one of that magnitude and excitement. It literally escapes me. If your mission is to find a cure, help fund a promising therapy. Seems like a no-brainer to me.
Recently, if you follow any ALS advocate on Facebook, there was a picture circulating of a very nice lake house. Said lake house was purchased as a second (maybe third?) home by the CEO of ALSA. This purchase raised quite the hub-bub in the community by its price tag. It’s a beautiful home, lake front, a sprawling 4,800+ home perfect for AirBnB. It was purchased for close to $900K, as a vacation home. I don’t know if we can all agree, but I will say it is in poor taste if you represent a community that is fighting a terminal disease that lays waste to families monetary and emotional resources, that many in the community are unable to sustain life because of the cost – to then buy a home with such a price tag as a vacation home. But hey, maybe it’s wheelchair accessible.
I believe one of the biggest problems is that the big wigs at ALSA have honestly lost touch with the community. Barb Newhouse, CEO of ALSA prior to this one, met with my husband, myself and other pALS in our Congressman’s office, without any handlers or staff, and we felt like she listened to our voices. I can not imagine that happening in the current climate. When the CEO of a non-profit makes over $350K a year in salary, not including bonuses, yet the organization has nothing meaningful to provide for its efforts, there is a serious disconnect. During one phone conversation we had with their media guy, back when we started in advocacy and Right To Try, I saw red. We were asking ALSA to help us with RTT and they were refusing. This particular person explained to the group that he understood. He had friends he made while working at ALSA who had died from ALS so he understood our position. Absolutely, positively, unequivocally I saw red. There is no way you can understand ALS unless you live it day-in-and-day-out. At the end of the day, this guy got to go home and leave ALS at his friends house. And the leadership board at ALSA gets to leave ALS at the office. They do not wake up in the middle of the night with their spouse who can’t breathe. They do not have to take their family member to the ER with yet another concussion from falling. They do not have to watch their spouses body deteriorate in front of them, daily, with no options to stop it. They get lake houses. They get “work trips” to Australia. They get expense accounts. It should not be an us vs. them thing, but that is what it has turned into. They do not get it. National ALSA should be ashamed and apologetic. They should do better. They should be the ones calling us asking us to help them get legislation through that helps pALS.
Instead, ALSA has repeatedly asked for pALS to advocate for the National ALS Registry – something that ALSA gets a no contest grant for each year from the federal government. It asks pALS to advocate for better health care. It asks them to do annual walks that, wait for it……….raises funds for itself! (We don’t even need to go into the fact that their biggest annual fundraiser are walks, for people who can’t walk. Couldn’t think of ANYTHING better?) National ALSA consistently asks pALS for things that benefit the organization but never gives the community what it wants. If ALSA had produced anything meaningful to the ALS landscape that would be one thing. But sadly it has not. It helps our pALS be more comfortable as they die. Gives them equipment to help with their progressively failing bodies. Provides clinics that they go to every 3 months to learn what parts of their bodies are giving out fastest.
Since its founding in 1985 only 2 pharmaceuticals have been approved as treatments in ALS by the FDA. The first is Riluzole, approved in 1995. Admittedly a lot of pALS do not take this because the side effects are not worth the abysmal extra times it gives the patient. The second is Radicava, approved in 2017. Radicava is supposed to slow the progression of physical loss, but it is not fully effective – post approval studies show no meaningful impact – and is an injection so not a lot of patients choose to submit to this treatment either.
So, in 36 years, an organization that has as its opening to their mission statement “to discover treatments and a cure”, has nil to provide the community in that department. An organization that received an ungodly amount of money from a viral fundraising campaign brought about by 2 pALS in the community – not the ALSA fundraising arm – has nothing meaningful to provide to the community. Pete and Pat were so excited about the prospects and hope brought about by the Ice Bucket Challenge. Sadly, these two men have fallen victim to ALS whilst ALSA still has millions in the bank. ALSA has failed us. ALSA continues to fail us.
I want to be like a kid and scream and throw a tantrum. I want our pALS to be heard. I want our pALS to be seen. I want ALSA to understand they are royally f’ing up. I don’t want to listen to my husband on another Zoom call with other pALS trying to figure out a way to save their own lives. There should be no Matthew McConaughey Dallas Buyers’ Club ideas floating around. These people should be with their families enjoying whatever time they have left while ALSA is doing the heavy lifting. These pALS should be the ones enjoying sunsets on the upper deck of a private lake house while ALSA gets the FDA to expedite therapies. It’s outrageous, infuriating, mind-boggling and heartbreaking. We have to find a way to fill the hole that ALSA has created when it abandoned this community. Because that is what it has done. ALSA has abandoned our community to serve itself and it’s time we did something about it.