The Reno-Tahoe Young Professionals Network is thrilled to have the opportunity to highlight the ALS Association Nevada Chapter, a non-profit dedicated to researching and supporting those with ALS.
By: Jake Ramatici Board Member of ALS Association Nevada Chapter
1. What is your mission?
To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.
2. Can you tell me about the work your organization does and the program or programs you run?
- The ALS Association Nevada Chapter is the only nonprofit in Nevada committed to helping people with ALS (also known as Lou Gehrig’s Disease) and their families. ALS is a fatal disease that can strike anyone at any time in their lives.Our Care Services team provides grants for respite care, a crucial resource for 24/7 caregivers, transportation, and financial assistance. Nevadans afflicted with ALS and their families also have access to our medical equipment closets and monthly support groups, located in both Southern and Northern Nevada. We support three multidisciplinary ALS clinics in Nevada. An ALS clinic offers a “one stop” model for people with ALS where they can see their neurologist and other clinicians in one visit versus having to travel from appointment to appointment. Thanks to the generosity of the community, we are able to offer all of these services free of charge.
3. How has this organization grown or changed over time?
The big turning point for the organization was 2014. In 2014, we hired a new executive director and the ALS Ice Bucket Challenge was born. This brought a focus to ALS that had never been experienced before. In the past six years, the organization went from a staff of 1.5 to a staff of 6. In 2014, they were serving less than 70 people with ALS, and today they serve over 130 people with ALS and their families. The organization’s budget has grown by 165% over the past five years.
4. How did you become involved with this organization?
My Father passed away due to ALS. As I grew older, I sought opportunities to give back to something I was passionate about. I looked into ALS of Nevada, which had a larger presence in Southern Nevada than Northern Nevada, and saw room to make an impact. That was four years ago. Since then we have seen significant growth in our region and to our chapter and our work has just begun.
5. Share your story, why is this cause so important to you?
Aside from losing my father to ALS, which was the catalyst for my involvement, I have come to understand the dire need for what we do in our community. Nevada is uniquely rural, and ALS does not see population nor population density. Meaning, even when you live 70 miles away from a treatment center, you still must seek care to treat your fatal ailment.
We are here to bridge that gap and many others that leave our patients far from the level of care needed for them and their families during is already difficult time. When I see true value coming from what we do, I cannot help but to want to dedicate more effort to the cause.
6. What has surprised you most about working with this cause/nonprofit?
People’s willingness to step up to the plate when they are shown the impact their generosity can have.
7. What can the local community or YPN members do to help your nonprofit?
The biggest challenge for our organization is awareness. Unless you know someone who has had ALS, it isn’t on your radar. ALS affects only 250,000 people at any one time in the US and there are approximately 160 people in Nevada with ALS. We would always welcome any assistance we can get with sharing information about the disease, outreach to medical professionals and helping us find people with ALS in the community who don’t know about us and what we provide.
8. Do you have any events coming up that you would like to highlight?
The organization has two events in Reno this spring. The first is Eat to Defeat ALS on March 19-20. We have partnered with Liberty Food & Wine Exchange to provide a meal that participants can take home to enjoy at their convenience. The package includes salad, steak, sides and dessert. The items need to be heated and the steak cooked (video instructions are included).
The second event is in early May; the Walk to Defeat ALS has been held in Reno for many years and has grown substantially over the past five years. This year, to ensure the safety of our participants and people with ALS, we will be hosting a dual event where people can participate at home or in their neighborhood as well as our Car Parade where you can decorate your vehicle and drive-thru the parade to help us show support to Nevadans with ALS.
9. What makes your organization unique?
We are the only nonprofit in Nevada that is dedicated to helping people with ALS. Being diagnosed with a terminal disease is devastating, as you can imagine. Many of the families we have helped have expressed how difficult it was to access insurance and doctors’ offices before we got involved and were able to guide them through the process.
10. How have you and your organization had to pivot or change to accommodate the COVID-19 situation/parameters?
One of the first things we do when someone is diagnosed is to offer to do a home visit where we talk to the family, answer questions and provide information at a pace they are comfortable with. Due to the pandemic, we immediately stopped all in-person visits and moved to virtual home visits, and started virtual support groups. It has been an adjustment, but we were able to help families see the benefit of participating virtually. We also moved our ALS clinics to a virtual format where the neurologist, clinicians, and our team met over Zoom to discuss each patient and create a treatment plan without exposing the person with ALS to multiple clinicians in the office. We have increased our communication with families and we have also partnered with other nonprofits to provide meal deliveries to families when necessary.
11. What else would you like to add?
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The disease robs people of the ability to walk, talk and eventually breathe. It traps them inside a body they no longer can control. People with ALS lose the power to use their legs, hold someone close, and simply say, “I love you”, before their bodies ultimately shut down. There is no known cause of the disease, although military veterans are approximately twice as likely to develop ALS as the general population. Every 90 minutes someone is diagnosed with ALS, and every 90 minutes someone loses the battle to this fatal disease. Living with ALS can cost up to $250,000 annually, depleting families of all savings. ALS doesn’t just impact the person with the disease, but it affects the entire family.
12. Where can we stay up-to-date?