Champions

This is my “ALS: A Love Story.” It’s about my husband, Matt Bellina.

I first me Matt in August of 2002 when we were both Virginia Tech. Matt thought I was a “drunk college girl” (I was not) and gave me dead flowers out of a dumpster. I couldn’t remember his name I was so flustered by this cute boy that I referred to him as “the hot one” for a week until we met up again.

Funny to think that’s how we started. Now, we have been in each other’s lives for over 15 years. Matt was officially diagnosed with ALS in April of 2014, so our family is coming up on four years of living with the disease.

Our life with ALS is made a little bit easier because of Matt’s inability to accept his diagnosis as a roadblock. He is very much in this fight, and mostly for others dealing with terminal illnesses, ALS and otherwise. Of course, his humor shines through most, lifting us all up when things don’t go according to plan in our day-to-day life. With ALS, that can happen quite a bit.

Before our diagnosis – Matt surprised me one night by having a friend drive him from campus to my townhouse. He crept under my window and started playing his harmonica until I came outside. And now, after our diagnosis – I have so many moments I cherish with Matt. Like when I come downstairs from putting Pax, our youngest son, to bed and see him cuddled up with our older boys, JP and Kip, reading a bedtime book, or discussing the day, or talking about God. It’s those times where Matt is just being a good dad to our boys, that really get me.

Matt is my heart. I do most everything in my life with his voice in the back of my head. If it’s something I know he wouldn’t be proud of, I know it’s not a good idea. I appreciate his understanding. I am not the easiest person to live with, but he sticks with me. He puts up with my moods and frustrations and still loves me, through it all.

On our first Valentine’s Day together, we promised not to get each other anything. I stayed true to that pact, and got him nothing. He made me a handmade card (I still have it), a giant balloon stuffed with fun things, and other trinkets. I looked like a chump. Let’s just say he’s the romantic in the family!

When it comes to ALS, everything in life becomes weird. Things you never thought you would do, are now every day occurrences. You have to laugh. and love. You have to love and grow together through it all, or you are going to fall apart. And for us, to live with this disease, that falling apart simply wasn’t an option.

Here at Augie’s Quest, we’re gearing up for a heart-filled month – with many of our ALS champions offering up a little of their love for the cause.

We’ve themed February, “ALS: A Love Story.” Starting today, we’ll feature one “ALS: A Love Story” story across Augie’s Quest’s website, social media and email list – culminating with a new twist on Augie and Lynne’s story on Augie’s 60^th birthday, February 15.

We’re focused on sharing our many ALS stories of love – moments of hope, support and comfort via friendships, marriages, family, caregivers, kids, grandkids, and of course, pets. We know these love stories are out there, despite this horrible disease – and felt it the perfect time of year to share that love with our entire community. And in doing so, together, we can help raise a little awareness and interest in this other side of ALS, one that we don’t often hear as much about.

Be sure to follow along on our social channels, share the stories with your personal networks, and get to know some awesome love stories from Boomer, Caitlin, Evan, Catherine, Bryan, Stacie and more.

And, we know many of you likely have your very own personal stories and experiences with love despite ALS, or in some cases because of ALS. Please join in and share yours, too!

So, will you join us in celebrating love this month?

Xoxo,

Augie & Lynne

Check out Augie and Lynne Nieto on a recent segment of CBS’s “The Doctors” !

“ALS isn’t an incurable disease; it is an underfunded one. This is a message you’ve heard Lynne and I share countless times, and one that drives our passion and tireless work for this cause.

Yet, never has it been more pressing, as we now have a promising drug on the near horizon that could slow the progression of the disease. The only thing standing in our way — the urgent funds needed to drive this, and other potential treatments and cures, across the finish line and into the marketplace to benefit so many people living with ALS today.

If you’ve ever wondered what our daily quest to #EndALS looks like, whether in the ALS Therapy Development Institute lab or behind the scenes of our innovative approach to ALS, we captured that story of our progress in a brief, easy-to-digest (and dare I say, “hip & fun”) explainer video.

Check it out!

We asked Natalie Morales, of NBC/Access Hollywood and our 2017 Champion for ALS Award Winner to lend her signature voice to the piece and Natalie graciously agreed, delivering a passionate and informed message about our cause. You’ll quickly see how we put every donation to work and why every gift is so important to our life-changing research.

Please share this video on your social channels and let your family, friends and colleagues know what is possible when you give to Augie’s Quest to Cure ALS.”

-Augie Nieto

Fundraising Efforts Drive Critical ALS Research for Augie’s Quest Rock ‘n’ Roll Marathon Series Events in Brooklyn, Philadelphia, Denver and Las Vegas

Orange County, November 14, 2017 – Augie’s Quest to Cure ALS today celebrates the achievements of 303 runners, the many champions living with ALS, a team of researchers, 560-plus fundraisers and key health and fitness clubs – its Team Quest4ALS. Over 13 months, the group successfully participated in several Rock ‘n’ Roll Marathon Series events, helping to drive awareness, advance funding for critical research, and race to find an ultimate cure for ALS.

Team Quest4ALS has raised $1,030,869 to defeat the disease through Rock ‘n’ Roll Marathon Series events in Brooklyn, Philadelphia, Denver and Las Vegas. Amyotrophic lateral sclerosis, or ALS, is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement and is often referred to as Lou Gehrig’s disease. ALS isn’t an incurable disease, it is only underfunded. Every dollar raised from the runners supports innovative research toward effective treatments and cures through Augie’s Quest and the ALS Therapy Development Institute (ALS TDI). Team Quest4ALS local results include:

• Brooklyn Rock ‘n’ Roll Half Marathon with 152 runners raising $417,386
• Philadelphia Rock ‘n’ Roll Half Marathon ,10k and 5k with 72 runners raising $352,000
• Denver Rock ‘n’ Roll Half Marathon with 31 runners raising $91,000
• And just this weekend for the Las Vegas Rock ‘n’ Roll Half & 10k with 52 runners raising $179,000

The next Team Quest4ALS race is the New Orleans Rock ‘n’ Roll Half Marathon on March 3-4, 2018. Check out www.teamquest4als.org to register and join the race to find a cure.

“Several of our health and fitness clubs proudly joined Team Quest4ALS, and we continue to add more to our Endurance Program, including Greenwood Athletic & Tennis Club, ClubSport, Vida Fitness, Las Vegas Athletic Club, River Valley Club as well as well as our longtime supporters, The Atlantic Club and Newtown Athletic Club,” says Kevin McHugh, who ran in all four Team Quest4ALS events, and is COO, The Atlantic Club.

The driving force behind the success of Team Quest4ALS are the many runners and champions living with ALS – from Philadelphia’s Matt Bellina, a 32-year-old husband, father to three boys and Navy veteran diagnosed with ALS in his late 20’s who lead a running team including his wife Caitlin and kicked off the ½ Marathon at the starting line; or researchers Fernando Viero, M.D., and Alex Calo, who fundraise and run with Team Quest4ALS while making strides every day in the lab at the ALS Therapy Development Institute in Cambridge, MA; to Claire Craven, who went far out of her comfort zone to train, walk and complete all four of the 1/2 marathon races to honor her husband, Eric, who is a board member at ALS TDI and lives with ALS.

“Although, we have now completed our initial four races and raised over $1,000,000, it is time to review our success and see how we can involve even more of our Clubs and members in Team Quest4ALS in 2018,” adds McHugh. “We are committed to generating the funds necessary to bring AT-1501, and other promising treatments, to the market for those in need. In racing and raising money, most importantly, we are providing HOPE for those with ALS!”

12^th Annual Tradition of Hope Gala Showcased the Access Hollywood/NBC Anchor’s Decade-Long Commitment to Raise Awareness and Funds to Create a Future without ALS

Orange County, Oct. 30, 2017 – Augie’s Quest to Cure ALS hosted its 12^th annual Tradition of Hope Gala over the weekend at the Ritz-Carlton Laguna Niguel, celebrating its many donors dedicated to funding cutting edge research for effective treatments and an ultimate cure for ALS. Amyotrophic lateral sclerosis, or ALS, is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement and is often referred to as Lou Gehrig’s disease.

Core to the evening’s event, the nonprofit awarded two national advocates and leaders with its most prestigious honors. First, presenting Matthew Stewart, Co-Founder and CEO of National Services Group with the Augie’s Quest Founder’s Award and then, awarding Natalie Morales, Access Hollywood Co-host and NBC’s West Coast anchor, its Augie’s Quest Champion for ALS Award. Masters of Ceremonies Jann Carl and Musical Host David Foster also joined Augie’s Quest to help celebrate and entertain the 400 attendees, who raised an incredible $1,092,217 for ALS research during the special evening.

“Augie’s Quest has been so lucky to have a power house like Natalie Morales in our corner, sharing our story whenever she can, emphasizing the importance of innovative research and essential funding, and championing our cause to end ALS,” said Augie Nieto, Chief Inspiration Officer and Co-Founder, Augie’s Quest to Cure ALS and Chairman, ALS Therapy Development Institute. “Her passion, dedication and unique voice are paying off, as is the commitment of so many others in our Augie’s Quest family – as we know ALS it isn’t an incurable disease, it is only underfunded. And we’re making great progress in taking on ALS thanks to people like Natalie and Matt, our very special honorees this year!”

“I want to echo a mantra I’ve heard over the years here — they may call ALS Lou Gehrig’s Disease, but I’m sure we’ll soon call it Augie Nieto’s Cure,” added Natalie Morales during her remarks accepting the Augie’s Quest Champion for ALS award.