In race against ALS, ex-Obama staffer and his wife find hope

Chicago Tribune (Sunday) - - FRONT PAGE - BY ALI­SON BOWEN

Brian Wal­lach wasn’t sup­posed to live to see his younger daugh­ter’s first birth­day.

Di­ag­nosed with amy­otrophic lat­eral scle­ro­sis (ALS), a ter­mi­nal dis­ease with no cure, doc­tors told him in 2017 that he might have six months to live.

To­day, he’s fo­cused on be­ing there for his daugh­ter’s fu­ture firsts: kinder­garten drop-off, mid­dle school dance, wed­ding day.

More than two years after his di­ag­no­sis, he has been lucky, he said, to ex­pe­ri­ence rel­a­tively limited pro­gres­sion of his dis­ease. After some bal­ance is­sues, the Ke­nil­worth res­i­dent now uses a cane — or, as he is care­ful to spec­ify, a “cool walk­ing stick” — to get around.

When Wal­lach was di­ag­nosed, nei­ther he nor his wife, San­dra Abre­vaya, knew much about ALS, a neu­rode­gen­er­a­tive dis­ease that

af­fects nerve cells in the brain and the spinal cord, even­tu­ally par­a­lyz­ing even the body’s abil­ity to breathe.

In re­sponse to Wal­lach’s di­ag­no­sis, the cou­ple, both 39, launched I AM ALS in Jan­uary 2019. Former staffers in the Obama White House, they mar­shaled les­sons learned while cam­paign­ing — gath­er­ing in­for­ma­tion, form­ing con­sen­sus, con­sid­er­ing the im­pos­si­ble pos­si­ble — to build a force to mo­bi­lize hope and change for those fac­ing a dis­ease they say can and should be cured.

Hope is be­gin­ning to emerge.

On Wed­nes­day, an in­no­va­tive trial at Mas­sachusetts Gen­eral Hos­pi­tal in Bos­ton re­ceived FDA ap­proval to test sev­eral drugs at the same time. In June, a bi­par­ti­san con­gres­sional cau­cus was cre­ated, which led to fed­eral fund­ing to­ward re­search be­ing dou­bled. And in Septem­ber, the Chan Zucker­berg Ini­tia­tive gave the cou­ple’s or­ga­ni­za­tion a $453,000 grant to de­velop dig­i­tal tools to con­nect pa­tients, care­givers, doc­tors and sci­en­tists.

“Last year, we made hope a word that was OK to use,” Wal­lach said. “This year, we have to make hope real.”

Au­da­cious­ness is the only op­tion, the cou­ple says, in their race against the clock.

Wal­lach logged 120,000 miles in the air last year, in­clud­ing trav­el­ing to Washington, D.C., in April, where he tes­ti­fied be­fore Congress and asked leg­is­la­tors to amp up fund­ing.

“Last year, ev­ery time some­one said, ‘Do you want to speak to us,’ I said, ‘yes.’ Ev­ery time some­one said, ‘There’s a meet­ing,’ I said, ‘I’m go­ing.’ ” he said. “Ev­ery time there was any­thing, I said, ‘Great, I’m on the plane.’ ”

Un­til Oc­to­ber, when Wal­lach fell while ex­it­ing a Lyft in Bos­ton after swing­ing a heavy back­pack onto his back. Thir­teen sta­ples in his head later, and after ter­ri­fy­ing Abre­vaya with a phone call, the two agreed he wouldn’t travel alone any­more. He’s main­tain­ing mo­men­tum for the cause with more hours in his home of­fice and fewer in air­ports.

In De­cem­ber, I AM ALS de­buted bill­boards around Times Square as part of its #CuresForAl­l cam­paign aimed at in­form­ing the public about the im­pact a cure or bet­ter treat­ment for a neu­rode­gen­er­a­tive dis­ease can have on other dis­eases such as mul­ti­ple scle­ro­sis, Alzheimer’s and Parkin­son’s. ALS pa­tients and their fam­i­lies from states in­clud­ing Michi­gan, Maine and Colorado were in New York for the launch.

The bill­boards noted the num­ber of peo­ple lost to ALS each day — 16 — with pho­to­graphs of those who died in 2019. Days ear­lier, Pete Frates, a founder of the vi­ral fundraiser the Ice Bucket Chal­lenge, which raised $115 mil­lion, had died. He was 34.

The cam­paign was also shared on so­cial me­dia. The posts ex­pressed the suf­fer­ing and loss na­tion­wide: a mother wrote about her son who was di­ag­nosed at 20 and died at 28; a son posted in honor of his dad; Colorado Rep. Ja­son Crow posted a mes­sage hon­or­ing his cousin.

It’s time, the cou­ple said, to switch ALS con­ver­sa­tions from a di­ag­no­sis rooted in dark­ness to the faces of peo­ple bravely mov­ing for­ward. They want to speed de­vel­op­ment of po­ten­tial cures and give pa­tients more ac­cess to ex­per­i­men­tal treat­ments.

That’s not an un­rea­son­able goal, said Sab­rina Paganoni, a physi­cian sci­en­tist at The Sean M. Healey & AMG Cen­ter for ALS at Mass Gen­eral in Bos­ton, which plans to test at least five dif­fer­ent med­i­ca­tions for ALS at the same time, a first for the dis­ease and some­thing she said could be a huge turn­ing point.

On Wed­nes­day, the Healey Cen­ter an­nounced it re­ceived FDA ap­proval to move for­ward with test­ing the first three drugs: Zilu­coplan, Verdiper­stat and CNM-Au8. Sim­i­lar to how can­cer drugs are al­ready tested, this gives pa­tients ac­cess to more treat­ments and al­lows re­searchers to quickly col­lect data and ac­cel­er­ate the pace to­ward a cure.

“This is a very ex­cit­ing time in the his­tory of ALS,” Paganoni said. “I think this is go­ing to be the decade when ALS is changed from a rapidly fa­tal dis­ease to a more chronic dis­ease that we can man­age.”

For years, Steve Per­rin, the chief ex­ec­u­tive of­fi­cer at the ALS Ther­apy De­vel­op­ment In­sti­tute, has mon­i­tored clin­i­cal tri­als for ALS. So far, he said, the two drugs ap­proved by the FDA, Rad­i­cava and Ri­lutek, are “a very mar­ginal slow­ing down of dis­ease.”

This year, he said the qual­ity of drugs go­ing into tri­als seems im­proved. He is ex­cited about sev­eral tri­als, in­clud­ing one study­ing stem cells and an­other test­ing a drug to po­ten­tially slow pro­gres­sion in some pa­tients.

“As a pa­tient you want to see some­thing mea­sur­able, and I don’t mean mea­sur­able in days,” he said. “If I’m a pa­tient, I want to see some­thing, and I want hope for my­self and my fam­ily. I want some­thing that is go­ing to slow the dis­ease down so I can watch my kids grow­ing up, I can watch them grad­u­ate from col­lege, I can watch them marry.”

But that takes re­sources. “We are in a time when we can rea­son­ably say that there’s go­ing to be new treat­ments avail­able,” Paganoni said. “But we need more fund­ing and sup­port, so all of this can hap­pen, and hap­pen soon.”

Nearly ev­ery mo­ment feels like a push-pull for Wal­lach and Abre­vaya.

Do they spend more pre­cious min­utes with their two daugh­ters, ages 4 and 2, or do they spend time away, among strangers — on a plane, in a re­searcher’s of­fice, walk­ing the halls of Congress — with the hope that those min­utes will, some­day, re­sult in time banked to cre­ate more fam­ily mem­o­ries.

“The hard­est bal­ance, if I’m hon­est, is, I love ev­ery minute I have with them,” Wal­lach said about his daugh­ters, “but I also feel this press­ing sense of, I need to be work­ing to­ward a goal of ac­tu­ally find­ing a cure.”

“We’re do­ing that so we have a shot at a real fu­ture to­gether,” Abre­vaya said about their time spent trav­el­ing and ad­vo­cat­ing.

At home, when the fam­ily heads for the door, the tod­dlers reach for their fa­ther’s shoes, and they get his walk­ing stick.

“While that both fills your heart with joy and ap­pre­ci­a­tion, it’s also painful that your tod­dlers are be­ing put in this po­si­tion,” Abre­vaya said.

The par­ents guard nor­malcy. They take their daugh­ters to swim at the neigh­bor­hood pool and on va­ca­tion with friends. Wal­lach wishes he could lift them above his head to touch the ceil­ing, like their un­cle can. But he can lie on the floor and play with them; he can lis­ten to them belt out songs on their pur­ple karaoke ma­chine.

They find ways to lighten a heavy sub­ject. On New Year’s Eve, the two danced in a video on the foun­da­tion’s In­sta­gram, singing into hair­brushes, and Wal­lach promised to get an “ALS: You Gone” tat­too if 20,000 peo­ple do­nated $10 to a Healey Cen­ter re­search fundraiser. It raised $40,000 in 24 hours, Wal­lach said. No mat­ter the out­come, he plans to get the tat­too.

The cou­ple, who both work full-time jobs — Abre­vaya is the pres­i­dent of non­profit Thrive, Wal­lach works at law firm Skad­den, Arps, Slate, Meagher & Flom — want more re­search, to cre­ate a pa­tient nav­i­ga­tion sys­tem, and to gather sig­na­tures for a let­ter ask­ing new FDA com­mis­sioner Stephen Hahn to speed ALS pa­tients’ ac­cess to pos­si­ble treat­ments.

And they keep look­ing for light. But it takes work.

Chang­ing life with ALS for Wal­lach, and for other pa­tients and their fam­i­lies, re­quires bold ac­tion from peo­ple with the power to make change: politi­cians, re­searchers, phi­lan­thropists.

As they meet oth­ers with ALS, they wel­come new friends and face the pain of los­ing some.

“It does make you uniquely ur­gent in what you do,” Wal­lach said. “You push be­cause you have to. You push be­cause you know that the time that we have is pre­cious, and that you want to see 20 years from now. And know that you can make that hap­pen.”

Wal­lach of­ten shares mo­ments about his ALS jour­ney on Twit­ter with his 40,000 fol­low­ers. Re­cently, he shared some­thing he wasn’t sure he should. It was a time he was un­able to find light.

On a re­cent night, he woke up to pain he’s had for the past few months, ra­di­at­ing from his right hip to his right calf.

He clutched a stuffed llama his daugh­ter gave him. And he be­gan to cry.

“I cried be­cause of the pain. I cried be­cause I couldn’t be the fa­ther to my girls I dreamed of be­ing,” he wrote. “I cried be­cause I couldn’t be the hus­band to my wife I dream of be­ing. Be­cause I saw the fu­ture zoom­ing ahead, and for a brief mo­ment I won­dered if I would be a part of it.”

His wife heard him cry­ing that night. She asked what was wrong. And he said maybe they would be bet­ter off if he left, liv­ing in­stead in an as­sisted liv­ing fa­cil­ity. Their daugh­ters, he told her, could have a dad who could do ev­ery­thing he dreamed of do­ing.

She looked at him in the dark.

“You are my light,” she said. “You are their light. The only way you are leav­ing us is if you die in my arms, and we aren’t go­ing to let that hap­pen for a long, long, long time.”

Fi­nally, he smiled.

“If I’m a pa­tient, I want to see some­thing, and I want hope for my­self and my fam­ily. I want some­thing that is go­ing to slow the dis­ease down so I can watch my kids grow­ing up, I can watch them grad­u­ate from col­lege, I can watch them marry.”

— Steve Per­rin, the chief ex­ec­u­tive of­fi­cer at the ALS Ther­apy De­vel­op­ment In­sti­tute

ERIN HOOLEY/CHICAGO TRI­BUNE

Hus­band and wife Brian Wal­lach and San­dra Abre­vaya sit to­gether in their home in Ke­nil­worth. They cre­ated I AM ALS in re­sponse to Wal­lach’s di­ag­no­sis.

Newspapers in English

Newspapers from USA

© PressReader. All rights reserved.