Donna Boring: “Laughing It Is”

In recognition of ALS Awareness Month, we’ve been sharing a lot of new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the 10th profile in that series.

“If I have to be the face of ALS,” Donna Boring said, “it’s not a bad face to have.”

Donna was diagnosed with ALS in 2008, at the age of 37. She is one of the heroes in The ALS Association’s new public service announcement (PSA) campaign showing “The Reality of ALS.”

Continue reading Donna Boring: “Laughing It Is”

Guest Post: This is The Fight of Our Lives

By Aaron Behnke

Note: In recognition of ALS Awareness Month, we’re sharing stories nearly every day in May about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the ninth profile in that series.

My name’s Aaron, but my friends call me “Bankz.” I’m a 39-year-old husband to Abbie and father to seven-month-old Lincoln.

It was a real shock when I received my ALS diagnosis less than six months ago. But now that I’ve had some time to let things sink in, it’s time to make some noise.

So “Team Bankz” is fighting to learn more about ALS and educate everyone who wants to learn. And we, along with other ALS Advocates, are fighting to make sure everyone affected by ALS can live a happy and rewarding life.

We’re fighting to bring hope to each person with ALS facing this battle. And we’re fighting to create opportunities for our friends, our families, and our communities to get involved in the search for a cure.

Continue reading Guest Post: This is The Fight of Our Lives

Passionate ALS Advocacy Fuels the Fight for a Cure

In recognition of ALS Awareness Month – with a theme of “Raise Your Voice” – we’re sharing new stories nearly every day in May. They’re stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the generous fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. They are all part of our ALS community, helping us move toward a world without ALS. This story highlights our National ALS Advocacy Conference – which embodies the true spirit of Raise Your Voice.

We’d like to extend a huge thank you to the more than 570 ALS Advocates who participated in our 2018 National ALS Advocacy Conference in Washington, D.C., this week. Nearly every state in the country was represented and nearly half of the participants were attending for the first time.

Most importantly, more than 100 people living with ALS made the trip to Washington to tell their stories and ask their members of Congress to fund research and do away with the five-month wait for Social Security Disability Insurance.

“Attending the ALS Advocacy Conference was one of the most rewarding things I have ever done,” said Karen Dunn, a first-time participant from Pennsylvania who was attending on behalf of her friend Melissa Cordek, a 37-year-old mother diagnosed with ALS two years ago. “I encourage everyone to become an ALS Advocate.”

Continue reading Passionate ALS Advocacy Fuels the Fight for a Cure

ALS Advocates Make a Real Difference

In recognition of ALS Awareness Month, we’re sharing stories nearly every day in May about how you can Raise Your Voice to join the fight against ALS. Today, on the heels of this week’s successful National ALS Advocacy Conference, we’re talking about why we need you to Raise Your Voice as an ALS Advocate.

Why do we advocate? Why do we share our stories? Why do we write letters and ask our friends and family to do the same?

Because advocacy truly makes a difference. In February, our ALS Advocates helped make the Steve Gleason Enduring Voices Act a law.

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Melissa Cordek: ‘My Kids Keep Me Going’

In recognition of ALS Awareness Month, we’re sharing stories nearly every day in May about people living with the disease and their caregivers, the volunteers and health care providers helping to make the lives of people with ALS better, the fundraisers and participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the fifth profile in that series.

Thirty-seven-year-old Melissa is a mother to Anthony (14) and Lauren (9). She’s been living with ALS for two years.

“I can’t say that I parent any different [since being diagnosed with ALS],” Melissa said. “As a parent, you have to pick and choose your battles and I’ve never been one to sweat the small stuff. But I can see how much my diagnosis has made my children grow and mature.”

She said Anthony and Lauren have been very brave and their “unconditional love” gives her the strength to keep fighting every day. Her focus is on trying to live every day to the fullest and show Anthony and Lauren how much she loves them.

Continue reading Melissa Cordek: ‘My Kids Keep Me Going’

The ALS Association Kicks Off ALS Awareness Month

We’re excited to kick off National ALS Awareness Month. The next 31 days will be dedicated to education about the disease and the work happening around the world to find a cure, and to advocating for people with ALS and their caregivers.

This year, we’re asking you to Raise Your Voice to elevate the fight against ALS.

As Simon Fitzmaurice, who lost his nine-year battle against ALS in 2017, wrote in his memoir, “It’s Not Dark Yet”: “Communication is key with ALS because the disease takes away your ability to speak. But it need not take your voice.”

Continue reading The ALS Association Kicks Off ALS Awareness Month

$3 Billion Boost for NIH in FY2018 Appropriations Bill Should Also Boost ALS Research

Late last month, Congress passed a $1.3 trillion fiscal year 2018 Consolidated Appropriations spending bill that included a $3 billion increase to funding for medical research to the National Institutes of Health (NIH). Funding to the NIH has increased to $37 billion, the largest bump they have seen in years.

Since NIH is the largest funder of ALS research in the world, any increase to their budget could also mean an increase in funding for ALS research. In fiscal 2017, the NIH spent $55 million on ALS research, up from $52.2 million in fiscal 2016.

“It’s a huge win for The ALS Association and the ALS community to see such a significant NIH budget increase,” said Calaneet Balas, president and CEO of The ALS Association. “We’re confident the increased budget will enable new ALS research, which is critical to ending this devastating disease, and thank our lawmakers for their hard work to make it possible. This gives our advocate community a boost, increasing our momentum to work hard toward our appropriation goals for fiscal year 2019.”

The ALS Association and its vast network of ALS Advocates are committed to supporting increased funding for the NIH, especially for the National Institute of Neurological Disorders and Stroke (NINDS), the lead institute for ALS research. Increased funding for the NIH is a consistent part of the Association’s legislative priorities each year.

The ALS Association is second to the NIH for ALS funding globally, with a $18 million research budget in fiscal year 2019 to fund external grants to top ALS researchers around the world.

The ALS Association is pleased that, as part of the increase, the NIH’s BRAIN Initiative received a $140 million investment. The BRAIN Initiative is aimed at developing tools, technologies, and foundational knowledge to understand how the brain’s circuits code and store information.

The Initiative’s work includes mapping the brain’s circuits and recording and modulating brain activity using cutting-edge technologies. We believe many of the BRAIN Initiative’s research projects will add knowledge to understanding the disease pathways underlying ALS.

The ALS Association will bring together more than 500 ALS Advocates in Washington, D.C., at the annual National ALS Advocacy Conference next month to continue to advocate for increased NIH funding, along with our other important legislative priorities.

For more information about our legislative priorities for the conference and this fiscal year, click here.

The NIH has posted its Congressional Justification and materials related to the administration’s fiscal year 2019 budget request for the agency to the NIH Office of Budget website at: https://officeofbudget.od.nih.gov/br.html.

The Overview is available at: https://officeofbudget.od.nih.gov/pdfs/FY19/br/Overview.pdf.

Justifications for individual institutes and centers are available at: https://officeofbudget.od.nih.gov/insti_center_subs.html.