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Join me this ALS Awareness Month!

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Hi everyone! May is one of my favorite months of the year. ALS Awareness Month allows so many members of this important community to tell their stories, and rally around the importance of ALS research. This year is no different, and there are so many ways you can show your support. Please consider some simple actions that have a huge impact!

1. Add a Frame to Your Facebook Profile Picture

Join me in changing your Facebook Profile Picture during ALS Awareness Month! Click HERE to add this frame to your photos – invite your friends and family to do the same.

2. Consider Hosting a Facebook Fundraiser!

It’s easy to join the quest to #EndALS – start with your own fundraiser for Augie’s Quest!

Visit https://fb.com/fund/augiesquest1/  to start.

A box will automatically appear that says ‘Let’s start with the basics,’ and Augie’s Quest will be pre-selected as your charity of choice.

You can then create your personal fundraising goal, and select the date your fundraiser will end. To host your fundraiser for ALS Awareness Month, choose June, 1, 2019 for the end of the fundraiser. Or keep yours open for longer! Once this is completed, click ‘Next!’

In the second step of creating your fundraiser, you have the opportunity to share why you selected Augie’s Quest as your charity of choice during ALS Awareness Month. To begin, you will select a title for your fundraiser. Suggestions might include:

Support Augie’s Quest to Cure ALS!

Give to Augie’s Quest during ALS Awareness Month

Join me in my fight against ALS!

If you have a personal connection to ALS, we encourage you to share your experiences and why our work matters to you. One example of this section can be found below:

Once this section is completed, you can click ‘Next’, add a photo, and launch your campaign!

Thanks so much for your support this month. Together, we can #EndALS!

~ Augie

Science Corner

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Check out our May 2019 edition of ‘Science Corner’, with Fernando Vieira, M.D. – the Chief Scientific Officer at ALS Therapy Development Institute. Stay tuned every month for exciting updates on ALS research!


In March, I had the pleasure of attending the 14th Annual BASH for Augie’s Quest in San Diego. The event provided an opportunity for fitness industry leaders to come together and celebrate their contributions to the ALS research space, while also raising nearly $1.9 million for ALS research.

Being in San Diego did give me the opportunity to escape some cold Massachusetts weather, but the highlight of my weekend was having the opportunity to share exciting updates in ALS research with families in Southern California. For these families, and so many more around the country, there is so much information out there about ALS – the best plan of action for treatment, the best hospitals and doctors, what to recognize in the progression of the disease.

As a scientist and researcher, I have a little different perspective on things I want these families to know. Please share this with friends and family throughout this month, as we hope to build as much awareness as possible to help end ALS once and for all. May is ALS Awareness Month, so we need your help to spread the word!

  1. Today, there is hope for those diagnosed with ALS.

  2. You have the opportunity to be a part of that hope.

As the Chief Scientific Officer at ALS Therapy Development Institute (ALS TDI), I am proud to say that we have the most robust pipeline of potential ALS treatments in our entire history.

ALS is an incredibly complex disease, because each person’s ALS is totally unique. We know that we will need several distinct treatment options to support the diversity of the ALS community, and give every ALS patient the chance to fight this disease.

ALS TDI is unique because we understand the need for a comprehensive approach to ALS treatment; and with so many drugs in the research pipeline all under one roof, we are able to quickly apply findings across multiple projects and accelerate our research. Because of the support Augie’s Quest has offered us, I am confident ALS TDI is equipped to develop treatments as fast or faster than anyone else. And today, ALS patients can help – help themselves and the research.

To date, we have enrolled more than 500 individuals with ALS in our Precision Medicine (PMP) program. Through PMP, we monitor areas like movement and speech – two key functions affected by ALS. All of our clinical assessments are captured using in-home technologies. Furthermore, each participant has access to their own data so they can be empowered by information to work with their physicians to make the best decisions about their own care. We are committed to personal and open relationships with people with ALS- and we hope that by partnering with new patients in the program, we can make huge leaps in the research process.

None of this would be possible without the support of Augie’s Quest and the entire ALS community, and I am so optimistic for what the future will bring. From Boston to San Diego, there’s no community more important to me.

If you know someone with ALS who could benefit from these efforts – reach out! To learn more about the Precision Medicine Program, please visit www.als.net/precision-medicine.

Lisa O’Brien

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Lisa O’Brien is an owner/operator of three OrangeTheory Fitness studios in Geneva, St. Charles and Elgin, Illinois. Here, she shares her personal family connection to ALS and why getting behind Augie’s Quest to Cure ALS is so important:

“My mom was just 46 when she was diagnosed with ALS. My three siblings and I were just kids, ranging in ages between 10 and 25. At the time, she was given only 3-6 months to live. She lived for 9 years with ALS. And fought hard, every step of the way. I feel so blessed to be involved with OTF, and afforded the platform to help not only bring awareness to this devastatingly awful disease, but to work to find a cure.

I hope together, as an OTF family, we can help others facing this dreadful ALS prognosis – one I know thousands are praying to NOT hear. I am beyond proud of our community, for joining forces to support, donate and stand up at many events around this cause. I know, we as a country, as a community, as Orangetheory Fitness will help Augie’s Quest find a cure and #endALS once and for all.”

Lisa and her family and friends will soon join thousands in the Chicagoland Orangetheory Fitness community to support Augie’s Quest to Cure ALS through our annual ALS Awareness Month campaign.

The Illinois OTF CoOp is also challenging their community to come out en mass on May 18 at Wrigley Field, the Home of the Chicago Cubs, to break the World Record for the largest HiiT class, all while benefitting Augie’s Quest. Learn more, get involved and be inspired about what is possible when OTF comes together to #Burn4ALS at https://www.worldslargesthiitclass.com.

Aly Milano

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ALS Awareness Month is especially important to Aly Milano’s family because it brings awareness to the struggles their family deals with on a daily basis. Here’s more from Aly, in her own words…

I have been working out at OrangeTheory in Naperville with my two sisters since 2016! It was our time to escape from the realities of ALS and have an hour to ourselves. After seeing the staff always having fun with one another, I decided to apply to work there. I love my OTF family and they have been by my side through all of my family’s hardships. I am so proud of our collective work at OrangeTheory to get behind Augie’s Quest to Cure ALS and raise much needed funds to #EndALS once and for all. And we can’t wait to be a part of the May 18 event at Wrigley Field!

We need to bring more attention to this awful disease and I am so proud to be supporting Augie’s Quest to do just that! The more awareness we can bring to this underfunded disease, the closer we get to finding a cure.

My mom, Moe, was first diagnosed with Stage 1 breast cancer in 2004 at the age of 37. With my dad, Paul and my two sisters by her side, she successfully fought that cancer, only to have it return 8 years later in 2012. More serious, Stage 4 cancer had metastasized to her bones.

While always by my mom’s side with loving support, encouragement, and humor, my dad began experiencing his own set of health concerns, including twitching muscles and significant muscle deterioration. One specific day, he was cleaning out his office and he remembers not being able to physically lift the garbage bag into the dumpster. He thought he was just out of shape. We all wish that was the case!

After several tests and continued symptoms, Mayo Clinic diagnosed my dad with ALS in the spring of 2015. After losing my mom to breast cancer that same year, my sisters and I rallied together to help be my father’s caregivers. Who was once a former gymnast and military man, is now slowly losing his freedom and ability to complete everyday tasks like bathing and brushing his teeth.

Every 90 minutes, someone is diagnosed with ALS. ALS affects nerve cells in the brain and spinal cord, leading to muscle weakness, a loss of motor function, paralysis, breathing problems, and, eventually, death. Although the disease paralyzes the body, the brain is still fully functioning. For unknown reasons, military veterans are approximately twice as likely to be diagnosed with the disease.

My dad, now at the age of 52, is currently 4 years into his diagnosis. The average lifespan of a person living with ALS is 3-5 years. His health is expected to deteriorate and will need a specialized wheelchair, speaking and breathing devices, eventual around the clock care, and even alterations to our home to make it more accessible.

ALS has taken a lot from my dad and our family, but the one thing it can’t break is our love for each other. His condition worsens, but nothing can kill my dad’s spirit. Although the future is scary, he tries not to think about it too much. “I like to think that ALS has actually given me the opportunity to live my life to the fullest, like the song Live Like You Were Dying,” my dad says.

ALS comes with no handbook. Witnessing my dad’s daily struggle with this disease has been an eye-opening experience. I hope no one has to know what it means to be affected by ALS. It is my hope to share my dad’s story and raise awareness of this horrific, debilitating disease.

Together we can create a world without ALS.

Bryan Wayne Galentine

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I am extremely fortunate to have had a career as a songwriter for more than 25 years now. Music has always been a huge part of my life, and I know how blessed I am; doing what I love every single day.

Not everyone can say that they’ve written a hit country music single, or heard their songs performed on the Grand Ole Opry and Country Music Television. It really is pretty fun to stand in a crowd at a concert, and hear the audience sing along to a song that you wrote. I’ve even won an award or two for my work.

I have made my living working alongside some of the very best in the music business – numerous ‘Songwriters of the Year,’ world-class musicians, and Grammy-nominated engineers and producers. I even met my wife recording a song I wrote (that’s its own story).

But a lot of that changed when I was diagnosed with ALS in April of 2017. It was a pretty terrifying time, and I knew the road ahead for me and my family was not going to be easy. Beyond the many other symptoms, the prospect of losing my voice became more and more real as each day went by; I had an increasingly difficult time swallowing and developed a persistent cough.

As I realized that my wife, my two sons, and my friends may never really hear my voice again, I decided to do something I never thought I would have – I put on my “singer” hat and made my own record.

I couldn’t think of anything better to give them than the music I wrote and sang myself – me, finally singing my own songs after so many years. With the incredible support of some old pals from the music industry, and the generosity of many close friends, I began writing and recording. For the first time, I felt I had put my own ‘voice’ into the music and lyrics – literally and figuratively. The album, While You Wait, became a series of positive messages that I hoped would inspire others, and a few songs I wrote about or for my wife and sons.

It’s funny, really – I guess I only found my voice once I started to lose it.

The process really taught me to better appreciate my wife, my sons, my family, my friends, and life in general. I wish I had gotten that wake-up call some other way, but if it took getting ALS to wake me up, so be it.

I want to help spread awareness about this disease, and why it’s so important for us to work to find a cure. I have decided instead of being angry and bitter about my diagnosis, I am going to take this opportunity to remind my friends and family how fleeting life is, and how important it is to appreciate every second. ALS has taught me to try my best, and to not take a single second for granted. Some days it’s easier said than done, but I’m trying.

At our album release party last year, my co-writers joined me on stage to help support me and sing the songs off the record. In all honesty, I needed their help; by then, ALS had essentially taken my singing voice. I had recorded the songs just in time.

Ashley Gorley, Neil Thrasher, Bonnie Baker, Jason Blaine, Joanna Janet, Big & Rich, James Otto – some of the best in the music business were right there by my side performing the songs I wrote. It was one of the best nights of my life.

I hope these songs inspire people for many years to come – to live in the moment, enjoy being with loved ones, and to always make time for what makes you happy. To quote one of the songs on the album – “To take a little time… rewind… and simplify.”


To Listen to Bryan’s album, “While You Wait”, click Here.

 To Follow Bryan on Instagram, click Here.

March 2019 ‘Science Corner’

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Check out our March 2019 edition of ‘Science Corner’, with Fernando Vieira, M.D. – the Chief Scientific Officer at ALS Therapy Development Institute. Stay tuned every month for exciting updates on ALS research!


I’m often asked, “What are you most excited about with today’s ALS science? What could be the next breakthrough?”

It’s a tough question to answer, partially because ALS is itself such a complex disease. But one thing that excites and inspires me is how we are partnering with people with ALS to learn how to better combat ALS. And in turn, our scientists are now able to share back valuable, personalized insights with patients about their experience with the disease.

This idea is the cornerstone of our Precision Medicine Program (PMP), of which we’ve now enrolled more than 500 individuals with ALS, and counting. Through the PMP, people with ALS monitor their disease progression in real-time via cutting-edge technologies that detect changes in their disease, particularly their movement and speech, two areas greatly affected by ALS. This individualized information helps people make more informed decisions and better manage their ALS, their progression and response to any interventions. No other research entity actively engages people with ALS in this way, it’s a multifaceted program that is empowering people with ALS.

In an exciting science collaboration with Google, we’re combing through the large datasets collected within the PMP- medical histories, genetics, demographics, voice recordings, and activity trackers.  We’re learning ways to trace and define a person’s unique experience with ALS. We believe these approaches can reveal ways to streamline the clinical trial process, making it more agile and less expensive.

One advancement coming out of the PMP that we’re currently exploring in our lab is — utilizing human neural cells “in a dish” to model cellular weakening and death (a prominent characteristic in ALS) to identify potential medicines that could improve the neuron’s energy production and survival.

PMP is an innovative, first-of-its kind model working to drastically speed up the drug validation process for ALS. And, with these crucial data, our scientists are rethinking how we target and treat ALS, uncovering new ideas, likely treatments and pathways to an ultimate cure.

We are committed to growing PMP, enrolling at least 1,000 people with ALS in the program. An ALS breakthrough could come from this robust program, and be one of many important outcomes from our partnership alongside so many living with ALS today.

I hope you’ll encourage the people you love with ALS to reach out and get connected to this program. Please help us spread the word!

Thank you for your generous and continued support of Augie’s Quest – your giving is making our science, the growth and impact of PMP become a reality. You’re helping us get one step closer to realizing the ALS breakthroughs that will change the experience of so many with this devastating disease.

To learn more about the Precision Medicine Program, please visit www.als.net/precision-medicine

Lindsey Rainwater

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There is a solution for every symptom, we must find a cure for the disease; in honor of Brian Rainwater and his courageous fight with ALS.

“There might not be a cure for the disease, but there is a solution for every symptom”, this was the response my Father always gave when faced with another progressive stage of ALS.

In the spring of 2008 my Father, at the young age of 49 years old was diagnosed with ALS – AKA, Lou Gehrig’s disease.

All my life I’d known my Father to be an energetic, engineer problem solver waking up every day with the sparkle of life in his eye. His solution to a common cold was always eat an orange, drink a cup of coffee, take two aspirin and go to work; his pace in life was focused and tenacious. I knew growing up that he always saw life through the lens of solutions- there was always a fix, never a problem that couldn’t be solved.

In 2008 when he was told he had ALS, you can imagine that his response to the way he saw the world quickly translated over to the way he saw his diagnosis.

ALS completely dismantles and destroys the mind’s ability to control the muscular system: and, in my experience, getting to know people that have been diagnosed with ALS is that the people that end up with this nasty disease are some of the most tenacious individuals I’ve ever met my life. This was no exception for my Father.

What I noticed most about the six plus years that my Dad lived with ALS was that he was completely untouched emotionally and spiritually by the nature of his physical condition. When it came to the need to modify his work so that he could continue providing for his family there was no question, he made a request for the equipment that he needed explaining the modifications necessary to now do his job with an eye gaze. Or the time he petitioned the local public transit to be able to have a wheelchair ramp in his vanpool so that he could continue his carpool commute instead of interrupting his routine to work. Never a question of submitting to being sick, instead, he always focused on finding the solution to his symptoms.

In the end his body naturally surrendered to the progression of ALS- he died on Father’s Day, 2014 after a joy-filled discussion about dogs and life decisions, the last thing I said to my dad was, “I love you, see you soon”.

I believe that everything happens for a reason, and the fact that the industry I have made my career home champions finding a cure for the very disease my Father died of, well, to me that is fate.

I cannot think of a more powerful group of solution-oriented people to take on this ambitious cause, than us.

Thank you, Augie Nieto, for your spirit and being a fighter, just like my Father did, you see the possibility of living with ALS and continuing the fight to provide hope for many. In our battle to find a cure for ALS, let’s take a page out of my Dad’s book and remember that there is always a solution if we choose to see life that way.

Augie’s Quest is working tirelessly to find a way to live with ALS, there is a solution and with the continued focus and funding I believe one day people will be able to take this disease head on and live with ALS. Thank you for helping us keep up the good fight, and thank you Daddy, for inspiring me to see the world in this way, the legacy of your perspective will live on in me for all my days.


Lindsey Rainwater is an experienced business advisor, executive coach and the founder of The Women in Fitness Association (WIFA). 

WIFA is the global fitness association supporting women in their career trajectory helping them rise to their fullest potential in business and life. 

She is known for her work advising businesses on their internal processes and systems, her original published content, additionally supporting individuals in transformational change and leadership development.

Lindsey is a widely published author, has been featured in many podcasts, books, facilitated keynote talks and workshops. In 2017, IHRSA (International Health, Racquet and Sportsclub Association) recognized her as a “Rising Star”. 

Her intention is to help individuals and organizations enjoy necessary change in order to succeed.

 

February 2019 ‘Science Corner’

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We’re excited to bring you our first edition of ‘Science Corner’, with Fernando Vieira, M.D. – the Chief Scientific Officer at ALS Therapy Development Institute. Stay tuned every month for exciting updates on ALS research!


By now, you’ve all heard about progress with AT-1501 – one of the most promising ALS treatments in development today that could slow down disease progression. This potential breakthrough also provides us an innovative model, a new roadmap to replicate and improve upon for future developments.

Because most ALS patients only live between 2-5 years after the disease’s onset, we are driven to uncover ways to provide people with ALS the gift of more time. That motivation influences our scientific strategy and our aggressive approach to discovery.

You may wonder ‘what else is the research team working on and excited about?’ Or even, ‘how does ALS TDI go about developing possible ALS treatments?’

The short answer: we test a lot of drugs. We have the most robust pipeline of potential ALS treatments in the world. And more than any other time, we now have the best shot at success. We are working day in and out to bring the next promising ALS treatments successfully through to clinical trials as quickly as possible.

One big reason we’re in this position today – is thanks to Augie and Lynne Nieto’s leadership, a couple you know and love who are a rare force, using their business savvy and unlimited passion, to drive our collective vision forward to end ALS. With Augie serving as our Chairman and Lynne a leader on our Board of Directors, we’re certain one day we’ll go from saying “Lou Gehrig’s disease” to “Augie’s Cure.”

Fact is, there will never be a single, magic silver bullet to treat and cure ALS. We know ALS is very complex, and each person’s ALS is unique, progressing and presenting differently. We will need multiple treatment options to support the ALS community and give every ALS patient a fighting chance against this disease. What’s more, it is likely our findings and treatment discoveries for ALS may also help fight other neurodegenerative diseases in the future.

In the coming months, I look forward to sharing more with you about our innovative precision medicine program, how we’re supporting people with ALS with real-time information to guide their personal ALS journey, and much more.

Because ALS is not incurable. It is only underfunded. This is a disease we can tackle, this is a problem we can solve.

That’s why your generous giving to Augie’s Quest is so critical. And it’s why we need you now more than ever. Together, ALS ultimately doesn’t stand a chance against us.

~ Fernando Vieira

Chief Scientific Officer, ALS Therapy Development Institute

Fernando G. Vieira, M.D. joined the ALS Therapy Development Institute in 2001. He is a research director focused on preclinical discovery and development of therapeutics for people with ALS. He works at the Institute because he believes it is the place where he can best work with others to help shape a world where an ALS diagnosis is no longer crippling. Fernando earned a bachelor’s degree in biological engineering from the University of Florida College of Engineering studied medicine at Harvard Medical School. He has dedicated his professional life to ending ALS. He has dedicated his personal life to being the best father he can be.

 

Lynne and Augie from Augie's Quest

Lynne’s “ALS: A Love Story”

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Valentine’s Day has become a special day for Augie’s Quest. We see it as a time to share several stories of love – love in spite of, and even because of ALS. Last year, we dubbed it “ALS: A Love Story” and asked many of our ALS Champions if they would share their adventures in love and ALS with us. And share they did, offering up beautiful, honest, personal experiences and musings on their relationships that endure, are challenged and thrive, through ALS.

I was so inspired and moved by each, and find myself revisiting them when I need a “pick me up” on a particularly tough day for Augie and me with ALS. I hope they do the same for you. Each story reminds me to pause, be as present as I can in this moment (however good or bad it may be), and consciously appreciate our loved ones a little more. But most important, I try and not sweat — but savor — the small stuff. 

Now, nearly 14 years into this disease and with Augie’s 61st birthday just around the corner, Augie and my “ALS love story” is all about finding and experiencing joy in the everyday; the small stuff. Getting big bear hugs from any of our eight grandbabies, quietly doing my needlepoint as I patiently wait for Augie to type out a silly message on his screen with his one big toe, taking our dog Rubye for a walk, marveling at Augie’s determination and ability to exercise as much as he can even when his body doesn’t cooperate, spending as much time as we can with our family and friends…these are the moments we savor together.

We’ve come so far in this diagnosis, accepting and living our “new normal.” Of course, it’s hard not to reflect back and remember how things used to be, before our life with ALS. When back then, those “small things” seemed to either get easily lost in our daily lives or blown out of proportion. ALS has certainly shifted our perspective. A rude and cruel awakening, but there’s so much more we cherish now.

There’s real joy in looking at the life we’ve built together despite ALS. I know Augie and I are extremely fortunate in this disease. When we were first diagnosed, we believed those life moments, whether a major milestone or the seemingly small ones, would never happen. Today, we try and see each of those small moments together as a gift. It helps to get us through. And it’s a gift Augie and I are working every day to make certain others living with ALS will experience, and find that much needed peace and comfort somehow in this disease.

– Lynne Nieto

Pat Quinn

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When Augie asks, you get to work! It’s my honor to be a guest author on the first Augie’s Quest email of 2019. We made it! Another year behind us, but don’t dwell on the past. Let’s prepare for what’s ahead and our pursuit of the ultimate goal – a cure for ALS. 2019 will unlock new mysteries of this dreaded disease. We must believe in creating change, not just hoping it happens one day. New year, new focus. Let’s do this!

I decided to write this on a day where I am really struggling, with the goal of not holding anything back. So, here it goes.

I was diagnosed back in March of 2013 at the age of 30, with my first noticeable symptoms dating back to the summer of 2011. Some would say my progression is slow simply because I am still alive, however, there is nothing slow about losing parts of your life or things that make you who you are.

ALS has destroyed so much. It’s decimated my physical body. I can no longer breathe on my own for more than a few minutes. So now a days, you will always see me wearing the mask to my bipap machine. I lost my voice, so I communicate through an eye gaze system. I can’t move on my own, so you will see me in a wheelchair. These things you can physically notice, but this disease doesn’t stop there.

The emotional and mental aspect, if you ask me, is even more devastating. It changed me and the person I loved the most – so much that our marriage didn’t survive. It crushes me. Some couples find a way through it, many do not. I am a young man. Everyone around me is having kids, building families, the things every man desires as he gets older. I am not, and it’s something I will never get over. ALS is an emotional roller coaster unlike anything you could ever imagine. If you’re not crying, let me tell you, I am.

This is where the search for new meaning, new focus, and new goals is what gives me hope. Despite all the challenges I face, I pride myself on my mental strength. My desire to inspire others to find their smile all while fighting to end ALS — it’s what keeps me going.

The new year is the perfect time to analyze ourselves and see what we do have in life, not focus on what we don’t have or what we’ve lost. 2019 brings new beginnings. It’s a time to move forward, not backward.

ALS can take and take and take, but I am still here. You are still here. Please join me in kicking off the new year with a renewed sense of appreciation for being alive today. Not yesterday, not last year, today. Let’s start with today.

Continue supporting Augie’s Quest so one day ALS will stop taking lives away and just be another disease we have treatments for, or God willing, a cure. 2019 – we are coming for you!

Stay strong,

Pat Quinn

Pat Quinn lives in Yonkers, NY and is an ALS advocate, the co-founder of the Ice Bucket Challenge, a friend and champion to Augie’s Quest and just an all-around awesome guy. Follow Pat at Quinn for the Win.

ALS won’t stop and neither will Augie’s Quest

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