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Strength In Numbers

One ALS Patient Finds Hope In Family And Research Data

ALS isn’t a disease you negotiate with. It doesn’t offer much information, let alone options. Though ALS research has made game-changing strides in recent years, an ALS diagnosis is still a death sentence.

When Ed Rapp received his ALS diagnosis, he turned to the doctor and asked, “How do we fight this thing?”The doctor replied, “It doesn’t work that way.”

But, ALS patient and advocate Ed Rapp doesn’t focus on the terminal. He focuses on living. And, for him, living with ALS comes down to three pillars: discipline, faith, and family. Maintaining a gluten-free, dairy-free diet, attending weekly acupuncture sessions, and reciting his religious affirmations are all a part of what he calls his “protocol.”

Before his diagnosis, his exposure to ALS came primarily from the Ice Bucket Challenge. He remembers, “I was aware of it on the fringes, and knew of the severity, but had not been as directly touched by it as many others had.”

If you wanted to, you could say Ed’s diagnosis stole a lot from him. At the time he was a top candidate for a CEO position at CAT, a company for which he had worked tirelessly for over thirty-seven years. But Ed doesn’t see it that way. “I saw my time at CAT as an opportunity to make a difference,” says Ed, “and now I am making a difference with ALS. If I can make a difference and do good, that’s a good life. If I was still traveling and working around the globe, I wouldn’t have the same relationships that I have today with my grandkids. I got to watch my oldest grandson learn to walk. I had my first-hole-in one with my son. Both our daughters got married and I was able to be part of that process because I had time.”

But if there’s one clear pattern we’ve seen time and time again amongst ALS patients, it’s a common resiliency and determination to find the silver lining. “Lots of good things happened as a result of my diagnosis,” Ed emphasizes.

One of those good things is Ed’s involvement in ALS research and advocacy. As a family, the Rapps founded Stay Strong vs. ALS and decided they wanted they project to focus on 3 key areas: “Supporting our home towns of Peoria and Raleigh through the ALS Walk, bringing doctors and engineers together to create assistive technology, and assisting patients through Project Answer ALS.”

Another thing we’ve noticed about ALS patients? They refuse to sit on the sidelines.

And thank God for that.

Ed chairs the Answer ALS Advisory Board, which oversees a global project originally founded in honor of former NFL player and ALS patient Steve Gleason. Today the project works to make aggressive strides in ALS research, science, technology, and education. Since 2013, it has built a strong network of partners that includes organizations like the NFL, PGA Tour, Microsoft, American Airlines, Caterpillar, and IBM. This is big league funding and cutting-edge science.

Ed explains, “With Answer ALS, we’re embracing technology that just didn’t exist ten years ago. What makes neurology hard is this: if you have cancer, you can biopsy it and determine the form of cancer and thus the treatment. But you can’t biopsy the brain or spinal cord. You have to find new ways to do it. Ten years ago it cost more than a million dollars and a couple months to do a genome sequence. Now it’s one thousand dollars and a day. You didn’t have the ability to create motor neurons in an embryonic state. Artificial intelligence hadn’t started, analytics wasn’t a major focus. We’re using modern day developments and technologies that weren’t available in the past, and using them to solve what those before us weren’t able to solve. And doing it in a highly collaborative way. That’s what makes Answer ALS so hopeful.”

During our conversation, Ed keeps coming back to this idea of hope, which seems to sit at the intersection of his pragmatism and positivity. He talks about the power of affirmations, and the mental benefits of keeping a list of all the gifts ALS has given him. “I have complete understanding that I’m not the only one impacted by this diagnosis. My wife, my kids, my parents. If I don’t go about this with a great attitude, not only do I impact my outlook, but the lives of those around me.”

His focus on positivity doesn’t mean he’s not immune to occasional feelings of fear. “I think what I fear most is the loss of independence — the ability to care for myself. When our kids were growing up and going through a tough time I always asked them, “What’s my job?” And their learned response was, “Take care of me.” I do fear the roles being reversed and my loss of independence.”

This is an all-too-common two-pronged fear amongst ALS patients. For so many of us, whether we are ALS patients, cancer patients, or athletes recovery from an injury, the loss of independence — whether temporary or permanent — is a blow to our pride. Coupled with the fear that we are asking too much of our caregivers and family members, that loss can, as Ed puts its, “result in a loss of self esteem.”

Though deeply self-aware and introspective, Ed is not, by nature, a self-focused man. “As a parent,” he says, “you’re only as happy as your saddest child.” Every minute he spends with his family collecting memories fuels his hope for the future of not only his family, but other families affected by ALS. “My greatest hope, he says, “is that in the next generation ALS will no longer be a death sentence.”

In Answer ALS, he sees the possibility of his hope coming to fruition. With its focus on transparent and accessible data analysis, the project adopted a platform that allows everyone from bioinformaticians to biologists complete public access to research data. The impact of free data access for researchers is immeasurable. “We’re creating the haystack,” says Ed, “and then we’re setting the world loose to discover the needle.”

The granddaughter of an ALS patient, Emma Comery is a Writer and Social Media Contributor with a passion for spotlighting amazing humans and writing stories that both inform and inspire.

#TalkALSToMe

ALS Blogger Sunny Erasmus Inspires Thousands To Share Their Stories

Image courtesy of the ALS Association Blog

Anyone who thinks being diagnosed with a terminal illness means their life is over needs to meet Sunny Erasmus. Since her doctor confirmed her ALS diagnosis in 2016, Sunny has committed herself 100% to living her best life.

Her “30 By 30” project, which went on to inspire her blog, SunnyStrong, was a bucket list of everything she wanted to do by the time she turned thirty. Cue some of the most memorable moments of her life: throwing the first pitch at a Rangers game, driving a Porsche 911 at 130mph, posing for the cover of a magazine. The woman is crushing it.

That blog has earned over 75,000 hits; fostered an international community of ALS patients, caregivers, and advocates (not to mention readers with no immediate personal connection to ALS); and kickstarted a fundraising and advocacy team called Team Sunny Strong. Sunny, who fully embodies the optimism implied by her name and feels destined by that name to go out in the world and spread sunshine, refuses to sit at home and let ALS isolate her. “You can have this disease and stay at home,” she says, “but not interacting with others can do a number on you and make this even harder to cope with. So why not get plugged in and make a lifestyle out of it?”

Sunny is rocking the ALS lifestyle. But, like any disease, some days are better than others, some months are better than others, and Sunny has experienced her fair share of good and bad.

One of the most common scary aspects of ALS is the not knowing. While the majority of patients pass away from ALS in two to five years, there have been many cases of patients living well beyond ten years. The disease does not have a set rate of progression. Additionally, ALS is a disease of deduction. “There’s no qualifier,” Sunny explains. “If you wake up and your throat hurts, your doctor can swab your throat and test you for the Flu. With ALS, there’s nothing like that. You have to rule out everything there is a qualifier for. And that can take a long time.”

For Sunny, the diagnostic process took eighteen months. For many patients, it can take much longer. Much. Longer. Having thrown out her back, Sunny went to see her doctor and decided to mention the twitch in her left ring finger and the difficulty closing her left hand. She had no idea what kind of chain reaction that small twitch would cause. To determine exactly what the cause was, her doctors had to rule everything out. That meant tests. Lots and lots of tests. “At one appointment,” Sunny remembers, “they took more blood than I knew you could take from a person and still have them walk out of the doctor’s office.”

In addition to the physical and mental toll the diagnostic process can take, there’s no small financial burden, as well. “You have a copay for every appointment,” Sunny points out. “Your first appointment is a meet-and-greet, then you come back for an eval, then again for test results. So that’s three copays per specialist. And the higher up in the chain you go, the longer it takes to make an appointment.” Sunny’s experience with the diagnostic process is a vivid example of the trials ALS patients and their families fight through every day. Nothing is simple. The biggest lesson Sunny learned during those endless months of appointments and tests is that “you have to be your own advocate.” No one, she says, knows how you’re feeling better than you.

At the time of her testing, Sunny was still single. While she sometimes had friends go to appointments with her, she couldn’t ask them to take off work all the time. “The day the neurologist told me I had ALS,” she remembers, “I was there all by myself.” That neurologist, who eventually became one of Sunny’s close friends, later told her that she felt so bad giving her that diagnosis when she was alone, but, says Sunny, “she just couldn’t let me walk out without telling me the truth.”

And yet, she says, “The day I got diagnosed was such a relief. It’s absurd to think of it that way, but I had been chasing and chasing and chasing for so long that it was such a relief to have an answer. I didn’t care which umbrella I held as long as I was holding one.”

From there, Sunny dove into the ALS community. Within months of her diagnosis, she was attending clinics and working with the ALS Association by doing walks, attending webinars, and attending the annual Advocacy Conference in Washington, D.C. Since then she has also attended the International Symposium on MND/ALS, which took place in Scotland, and recently applied to attend the upcoming 2019 Muscular Dystrophy Association Conference.

And in the midst of all these ALS ups and down, Sunny has fallen in love, gotten married, adopted many pets (whom she frequently blogs about), and traveled. Yes, there are days when she feels so terrible “it’s not worth the effort of putting on a bra and leaving the house.” Yes, she’s lost almost all her manual dexterity and has to take notes using her phone and voice texting. Yes, her voice has become a lot more monotone as dysarthria looms. And, yes, she walks a bit like Frankenstein, stiff-legged with a wide gait. But she refuses to give up her quality of life.

Through and through, Sunny is a people person. Each quarter she attends a clinic with ten to fifteen other ALS patients and their caregivers. She meets with her neurologist, dietitian, social worker, nurse, and clinical coordinator, and the rest of the visit is basically a big party with barbecue and donuts. “To be able to get through all my appointments and visit with other families is huge,” she says.

While working on her blog one day, Sunny had the idea for a story-sharing project. She called it #TalkALSToMe. She pitched the idea to her clinic community, and was stunned by how easily people “poured their hearts out.” She shared their stories on her blog and sparked a viral ALS story exchange on Twitter and other social media platforms. It’s rare to read digital content that is at once deeply personal and universally relatable, but Sunny has a knack for it. Witty, wry, and down-to-earth, she finds ways to spotlight the happiness, love, and hilarity hiding in the day-to-day struggles of ALS.

When she first published her blog, Sunny could not imagine the widespread impact it would have on the ALS community. When she had to quit her job three and a half years after her diagnosis, it was a blow, to put it lightly. But since then she has thrown herself into the ALS community, and she has come to the realization that using her blog to reach others in the ALS community is her calling. “It’s a really sucky club to join but it’s a wonderful community to be a part of,” she says.

The granddaughter of an ALS patient, Emma Comery is a Writer and Social Media Contributor with a passion for spotlighting amazing humans and writing stories that both inform and inspire.

Boots On The Ground: ALS Care Specialist Juliet Pierce Offers A Look Into The World Of ALS Chapters

As part of SimpliHere’s Advocate Spotlight Series, we sat down with Juliet Pierce, a Care Services Specialist at the ALSA Mid-America Chapter in Kansas City, Kansas.

The ALS Association is a nonprofit dedicated to raising money for research and patient services, as well as advocating in state and federal government on issues related to ALS. There are ALS Association Chapters operating across the country, each serving their local ALS communities.

From training rural hospitals in ALS patient care to matching patients with neurologists and life-changing equipment to advocating on Capitol Hill, Juliet is part of a critical team fighting ALS at the local and national level.

Juliet shared with us an up-close look at the resources her chapter provides patients, the day-to-day operations of a treatment center, and what life is like as a professional ALS warrior.

Can you tell us about the ALS Association Mid-America Chapter?

We are the ones that probably have the most direct care contact with the ALS community. We are the registered nurses and social workers who are the boots on the ground, at the bedside of ALS patients, with them until sometimes literally their last breath. We serve at least 650 families at any time in all of Kansas and Nebraska, and two thirds of Missouri. Some patients travel from Oklahoma and Arkansas and Iowa for research and our specialists. As the Mid-America chapter, we have people in urban and rural communities. And this terminal illness poses many challenges for both demographics.

We have multiple multi-disciplinary treatment centers, and a telemedicine center. We have respiratory therapists, physical therapists, research team, social worker, occupational therapist. It’s one of the crown jewels of our care services. There have been studies put forth by NEALS (the Northeast ALS Consortium) that has said patients who attend a multi-disciplinary treatment center have a better quality of life, better symptom management.

Other services we provide is an equipment loan closet to provide power wheelchairs, walkers, travel wheelchairs, etc at no cost to patients. We also have communication devices. We have advocacy in Washington and locally. We have a special program and procedure for getting newly diagnosed clients into our services and clinics. We have family support group, caregiver support groups, ALS in-services with the community, education and outreach. Our goal is to do everything possible to empower these patients to live their life to the fullest, slow down the progression of the disease, and one day find a cure.

How do you help people in rural communities?

It’s an ongoing challenge. We use things like telemedicine clinics which allow people to access a teladoc. The ALS neurologist is teleconferenced in from the ALS health system, and there’s a team on-hand directly with the patient. The more remote you get, the less local hospices and local hospitals have resources and staffing to help. We try to provide online resources and train hospitals that are taking care of these patients. But it doesn’t replace the hands-on care that’s desperately needed for the activities of daily living. One of the first needs patients develop are assistance with getting up, toilet, hygiene, eating, dressing. Right now that’s an out of pocket expense, and there’s tremendous burden on the spouse who is typically the caregiver. So it’s not resolved.

Do you have a personal connection to ALS?

No, I don’t. I have been a registered nurse since 1992. It seems like my whole life’s training has really groomed me to be an ALS training. I’ve done ER Trauma, ICU, OR, orthopedics. There’s so many incredible areas to try in nursing, and I just kept cross-training.

How did you get started with the Chapter?

I literally fell into this job. I had been doing hospital-based nursing and I just wanted to get out of that very demanding, physical world. I wanted to be in a more corporate world. I’ve been doing this since 2013. I like to say I didn’t choose ALS, it chose me. It’s a community and a mission and a fight that I have fallen in love with. I want to be part of the solution. I want to see this get to a cure. It’s very frustrating when I’m so solution-driven but I need to be patient.

How do you interact with patients?

I don’t have to manage other staff, but we do have projects we work on, and I’m a team lead for research, resources, education and outreach. So I do a lot of representation of our Chapter, association, and cause. I use a lot of wartime references because there are so many who are impacted by this and it truly is a battle. On Mondays I go to the Kansas University clinic and see fifteen patients with ALS. That keeps my finger on the pulse and I never want to get too far from that.

What are some of your personal goals for the ALS movement?

I always like to start with the individual person with ALS experience. I never want to go too far off topic without thinking of a person specifically. So for example, I just got back from purchasing an extra special sympathy card for a gentleman I developed a good relationship with. He came from Oklahoma to the KU clinic and he and his family were so happy with the services they received that they started a chapter of their own in Oklahoma. And he just passed away. You grieve for every person who loses the battle, but there are some clients that literally take a piece of your heart or soul with them. So when I went to Washington [for the ALS Advocacy Conference), I specifically had three people in mind. I didn’t have any patients with me because many of them can’t afford the time and expense. So I have specific people I felt I was representing: a young woman police officer with ALS, a gentleman who was thirty-six who had served in the Army for sixteen years, and another gentleman who’s had ALS for almost two years.

Typically people with ALS will pass away within two to five years. You are with them during these intimate times and they share personal secrets and fears about death and symptoms. But you’re preparing for their funerals. You do everything to help them, but you start preparing yourself. I carry those people in my heart and keep their memory alive and honored.

Does that feel heavy?

Yes, absolutely. It’s impossible for it not to feel heavy. The way I keep myself from despair is through a passion that I’ve developed for ALS research. That is truly our hope for a future for this community. I’m a team lead for research, so if anyone in our Chapter wants to know anything about cutting edge research, I spend every day looking at what’s going on in that world. I’m not an expert on everything, but I’m constantly learning what’s going on. Through innovation and research, that’s where I find the brightness and the hope.

What is your best memory as an ALS advocate?

My daily rewards. I call them my ALS miracles. For example, my colleague just left early to hand deliver a high tech communication device and mounting system that she’s giving a patient at no cost, for however long she needs. So my colleague shared with me the joyful email she received when the patient found out she was getting this gift. I have the privilege of witnessing an ALS miracle at least once a week, sometimes twice a week. Those are the daily rewards that are precious.

On a bigger scale, I loved going to Washington. I loved advocating on the hill and thinking globally about the big issues. I have enough expertise that I’m ready to push to the next level and make our services and Chapter as efficient as possible. I have lots of dreams and I’m going to keep working hard because I think it will get to the point where it will get too frustrating for me to just keep holding hands and watching these people die. And that’s not to say that holding those hands is not an extreme honor, but it can take a toll, and you just naturally have to — in order to stay fresh and committed — you need to reinvent yourself in the battle to find new ways to contribute. I am always ready, willing, and able to take on a new role. The science and symptom management has become a part of my DNA. I can literally talk ALS anytime. I know it inside and out. When I first started, it was quite overwhelming when people called in with different issues. But that’s no longer an intellectual challenge.

How can someone get involved in the fight against ALS?

Just keeping the conversation alive. Keeping ALS on the hearts and minds of our friends, family, businesses, legislators, and healthcare professionals. At the very least, ALS awareness is starting the conversation. Join a local Walk To Defeat ALS. Everyone can do that. If they want to take it to the next level, they can volunteer, take a class, work with their local Chapter. There are hospices that need volunteers to sit with people who have ALS and be companions for a couple hours. Be a visit therapist. This disease is all-consuming, so whatever you can bring to the table, ALS can probably utilize your skillset.

I would encourage folks, if they haven’t, to get the contact information for their local ALS Chapter. There could be support and services that they are completely unaware of, and that could make all the difference in how they are living with the disease. There is so much information out there.

***

To wrap up our conversation, Juliet emphasizes for the mid-america patients, caregivers, and advocates, “Anything having to do with ALS, please call us. If we don’t know the answer, we will refer you to someone who can help you.”

The ALS Association Mid-America Chapter Regional office
6950 Squibb Rd., Ste. 210
Mission, KS 66202
(913) 648-2062

Top 7 Digital Augmentative And Alternative Communication Tools For ALS Patients

From wheelchair ramps to handicapped parking spots, we make real-world accommodations for people with disabilities every day. Because it’s considerate. Because it’s inclusive. Because it’s the right thing to do.

As the smartphone continues to change the world, people are asking two questions: Shouldn’t we provide the same accessibility in the digital world? And, looking at it the other way, why can’t we use digital technology to create future accommodations in the real world?

That right there is the foundational idea of Augmentative and Alternative Communication, or AAC. AAC refers to any method of communication other than speech, and can be as simple as eye blinks and gestures or as advanced as electronic communication devices. For years, patients with ALS or other speech-impeding diseases have been relying on tools like white boards for non-verbal communication. But in recent years, the smart-technology world has seen an upward trend in the number of AAC apps.

To help you navigate the ever-growing world of AAC software and apps, here’s a look at the range of AAC options available today.

1. SimpliHere

We’ll start with our favorite (winky face). The three-pronged interface of SimpliHere provides augmentative and alternative communication tools in the form of easy-to-read symbols, connection to the greater ALS community, and access to valuable resources like news updates, products, and services to help manage daily life. Exciting features include an integrated newsfeed, quick connections to forums, and voice-bank tools. Large buttons make this app easy-to-use for patients with muscle control symptoms, as well. SimpliHere is still operating under 1.0 status, which means users are encouraged to submit feedback via reviews and ratings to let SimpliHere know how they can improve the app in SimpliHere2.0 to best meet your needs. Free on iTunes

2. iSpeech Text To Speech

This easy-to-use app converts text to speech with high-quality voices. You can even iSpeech Bush ™ or iSpeech Obama TTS to have your text read aloud by a former president! Free on iTunes

3. Proloquo2Go

As one of the biggest AAC apps on the market, Proloquo2Go is symbol-based. However, it also offers text-to-speech voices that sound pretty natural, automatic conjugation, and a default vocabulary of over 7,000 items. This app can be used on an iPhone, iPad, or iPod Touch. $249.99 on iTunes

4. Talk For Me

This text-to-speech app has tons of customizable options for saving frequently used sentences and phrases. Users have the option of setting the speech to read as they type, or after the sentence is completed. There’s even punctuation awareness and Siri Shortcuts Support. Free on iTunes

5. GazeSpeaker

For patients who have lost their speech and mobility, GazeSpeaker may be the best tool out there. It features a grid with different cells, and you can modify the grid to suit your needs. To speak, simply activate a cell on the grid by looking at it on your desktop or tablet. Features include a training module, contacts module, auto-adaptive predictive keyboard, the ability to read and write emails, watch videos, listen to music, and navigate Google Maps with your eyes. Free at gazespeaker.org

6. Voice4U

Voice4U is an image- and symbol-based AAC that can generate a voice in thirty different languages. Although it comes with 180 symbols, you can add up to 10,000, and you can even connect the app to Bluetooth or use it offline. $59.99 on iTunes

7. Locabulary Lite

One of the cleanest, smallest apps, Locabulary Lite allows users to create categories and phrases that are saved and easily accessible with a few clicks. Free on iTunes

Love Conquers All: 5 Game-Changing Organizations In The ALS Community

“The mission of SimpliHere is to help patients and families impacted by neurodegenerative diseases such as ALS preserve their ability to communicate, cope, and stay connected to the wider community.”

During her mother’s battle with ALS, our founder Joanna Rosenberg saw first-hand how easily it is for ALS patients to lose touch with their immediate and wider communities. That’s why SimpliHere is dedicated to forging and preserving community connection for ALS patients and their caregivers. Community is not only a cornerstone of our mission as company, but the pulse of the ALS army. Through shared experience, awareness campaigns, and unparalleled communication, Amyotrophic Lateral Sclerosis is facing a formidable force of patients, caregivers, researchers, policymakers, fundraisers, and advocates.

As new campaigns, organizations, and individuals join the fight against ALS every day, we’re taking a look at just a few of the original and inspirational ALS organizations build in the spirit of community.

Pete Frates #3 Fund

Founded in honor of professional baseball player, coach, and enthusiast Pete Frates, this grand slam organization was instrumental in bringing ALS into the international spotlight. After his 2012 diagnosis, Pete brought more than just the baseball community together with the Ice Bucket Challenge, and his ALS team set the standard for awareness and fundraising campaigns.

In the last five years, “Team Frate Train,” as they’re called, has organized dozens of innovative and creative fundraising campaigns. Today Pete and his team continue fighting against this disease with ALS games at Fenway Park to the international event,“Pints 4 Pete,” and one pretty dapper charity blazer.

The ALS Association

Possibly the biggest name in the ALS network, The ALS Association operates around three main foci: global research, nationwide advocacy, and empowerment and support for patients and family members. With headquarters in Washington, D.C., the Association is right in the middle of the policy-making arena, and each year they organize the National ALS Advocacy Conference, where PALS, family members, and advocates talk face-to-face with members of Congress.

The Association has planted seeds across the nation with its local chapters and support groups, creating networks of support and providing care and resources for PALS. For many years ALS remained relatively anonymous, even after Lou Gehrig’s highly publicized battle with the disease, but with an unapologetic voice, the ALS Association has established itself as one of the top resources for ALS statistics, research updates, and information.

Their most recent awareness campaign — #VoiceYourLove — is a Valentine-inspired bid to raise awareness for one of the disease’s most heart wrenching symptoms: losing the ability to speak.

The Angel Fund

In 1997, ALS patient Ginny Delvecchio began raising funds and awareness for ALS, eventually establishing The Angel Fund. A year later, Ginny passed away, but her family continued fostering and growing the Fund, gaining momentum until it was big enough to warrant a board of directors and partnership with the Cecil B. Day Laboratory for Neuromuscular Research at UMASS Medical School.

What is so striking about this organization is how easily it could have floundered. After only a year, The Angel Fund was left without its founding mother — many a nonprofit has been known to fail because of far less. But the community spirit that Ginny inspired ensured that The Angel Fund would never be without supporters, advocates, and organizers. And now, over twenty years later, The Angel Fund operates as a conduit for the Day Lab for funds and awareness, and continues to be one of the most impactful ALS charities.

ALS Therapy Development Institute

As a nonprofit biotech in a world of Big Pharma, the ALS Therapy Development Institute is a shining example of what a united community can accomplish. Nestled in Cambridge, MA, the heart of biotech, the institute is dedicated solely to ALS research and is led by ALS patients and drug development experts working side-by-side.

The origin story of this research powerhouse is a double-sided coin of heartbreak and inspiration. Over twenty years ago, in a time when ALS therapies were hugely underdeveloped, a young man named Stephen Heywood was diagnosed with ALS. In 1999, after Stephen’s passing, his brother James founded the ALS Therapy Development Institute in the basement of his family home.

Today the institute has expanded into the largest nonprofit biotech focused solely on ALS, and it serves as a testament to how far we’ve come in ALS research and therapies, and a reminder that any knowledge gained is significant ground gained in the fight against ALS.

UMASS ALS Cellucci Fund

Images courtesy of UMASS Medical School Communications

The Cellucci Fund isn’t just a research endowment; it’s a love story. Founded by former Massachusetts Governor and ALS patient Paul Cellucci, the Cellucci Fund aspires to create a $10 million endowment. A lifelong politician, Cellucci never lost a single campaign, and in the eyes of his loved ones, he didn’t lose his campaign against ALS, either. The incredible amount of money and awareness he raised was a win in itself.

Now, just six years after Paul’s passing, his wife Jan continues the campaign, and the Cellucci Fund has already raised $5 million. The money raised directly supports innovative research ideas in interdisciplinary labs at UMASS Medical School, its affiliate.

***

There’s a reason entire foundations are formed and research laboratories funded in response to a single person’s pain. Empathy is stronger when there’s backstory or face-to-face interaction, and when a person we have loved, known, or had even just one memorable conversation with experiences pain, we feel it, too. Empathy is a worthwhile contagion, an instinct of humanity, and a catalyst for action.

Thus, as important as it is to know the numbers, statistics, and scientific terms that define ALS, it is just as important to know and share the stories and faces of this disease. As we’ve seen with these five extraordinary ALS communities, one person’s story can be enough to spark a movement.

Take the first steps in sharing your ALS story by taking our brief ALS Patient and Caregiver Survey.

What Will 2019 Bring For ALS Research Funding And Policy?

With Black Friday under our belts, the holidays are rushing toward us like a team of reindeer, and 2019 isn’t far behind. The new year brings new goals, new resolutions, a crisp new wall calendar, and lots of political changes. As a result of the 2018 midterm elections, 100 women were voted into Congress, the Democrats took the house, and the country is glued to their TVs and phones, waiting to see what happens next.

If you’re like us, you’ve got a big question on your mind: What does the upcoming political transition mean for the fight against ALS?

(Image courtesy of the CDC)

Let’s take a look at the National ALS Registry, the most valuable player in the fight. As the only population-based U.S. registry that captures data on ALS patients and causes, the National ALS Registry is our most valuable tool for advancing research. Researchers from around the world have access to the registry, which aims to collect the most accurate information possible by including as many patients as possible.

Like all efforts to save human lives, growing the Registry takes money.

Since its conception in 2008, the Registry has been run by the Centers For Disease Control And Prevention (CDC), and funding has been maintained by Congress. In light of November’s midterm elections, the future of registry funding is less certain — the level of funding could be questioned under new leadership. So, after all the votes have been counted and winners declared what kind of disease funding and policy action can we anticipate in the new year?

For the most part, the future shows relative stability.

House Reps Eliot Engel (D-NY) and Peter King (R-NY) worked side-by-side to secure a $10 million appropriation for the CDC in the 2018 fiscal year, proving what we all know but too often fail to demonstrate: “Necessity is the mother of bipartisanship” (to quote American novelist Christopher Buckley).

(Images courtesy of U.S. Rep. Tom Cole/Flickr and U.S. Rep. Rosa DeLauro’s Twitter page)

Engel and King both retained their seats in the midterms, setting the Registry up for continued support on both sides of the aisle. House member Tom Cole (R-OK), who put serious man hours into unifying the subcommittee and getting $68 million in grants for public school programs signed into effect, also retained his seat in the Oklahoma Congressional District 04. But with Democrats taking over the House, Cole will be handing over his position as chair of the House Subcommittee on Labor, Health and Human Services, Education and Related Agencies to Rep. Rosa DeLauro (D-CT).

The change of Subcommittee Chair, however, may not impair the progress that the subcommittee has made in recent years. Cole, who was a diehard believer in bipartisanship, has set a precedent that DeLauro appears to intend to follow. In an article by the Tahlequah Daily Press, Cole expressed faith in DeLauro to continue the bipartisan support effort for biomedical research, saying, “…she’s been a partner in this each and every step of the way.” So even here, with a change of power, the fight for increased research funding and continued support seems ever hopeful and realistic.

(Image courtesy of AP Photo/Steve Cannon)

Down in Florida, a recount determined that Governor Rick Scott (R-FL) won out over Senate incumbent Bill Nelson (D-FL). Nelson was a pivotal player in the Dear Colleague Letter campaign that secured $10 million for the registry for the upcoming 2019 fiscal year. As for Scott, not much is known about his plans for CDC funding, but his history of working with the CDC to combat the Ebola Virus, and his declaration of ALS Awareness month in Florida suggest the efforts of the ALS community and the CDC may resonate with him.

ALS sneaks up on us swathed in it’s dark cloak of unknown. We know it kills, but we don’t know why, and we don’t know how to stop it. For a disease like this — one with no known causes and no cure — the best defense is knowledge. Knowledge is our sword, our shield, and our lasso of neurodegenerative truth. That’s why continued funding and support for the ALS Registry is so crucial, and we as patients, caregivers, advocates, and citizens need to call upon our representatives to support legislature that furthers biomedical research.

2019 New Year’s Resolution: Fight ALS with all we have.