My name is Kennedy Arney and I am 10 years old. Like me, this event continues to grow every year. This makes my heart so happy to look up and see so many supportive faces. I am here today to tell you what the Susan Mast ALS Foundation means to me and my family.
I was diagnosed with juvenile ALS at the age of six. Having ALS at any age is not easy.
We spend a lot of time in the car traveling to see my team of doctors and physical therapists. I use a lot of equipment and medical supplies. Everyday tasks take extra steps and people to help me complete them. It can be exhausting.
My family received a grant to help widen doorways so my equipment could fit through them, we also received a ramp from the amazing Bylsma family. We have received pre-cooked meals. They come with hand-drawn cards of encouragement and support that make my Mom smile at the end of a hard day. The team also got me tickets and arranged for me to see Avril Lavigne. It was super cool.
Having ALS requires a village of support. People ask me how I feel all of the time. But the answer is pretty simple. I will show you with some audience support. If anyone in the
audience has lost a loved one to ALS please raise your hand. Take a look around. 80% of people with ALS die within 2-5 years of being diagnosed. We slowly lose our ability to walk, swallow, talk and breathe. There is no cure and our numbers grow every day. So my answer to the question of how I feel is BLESSED. I am still here and I am still growing. Please remember
the faces of these families. This is where your pedals and steps count. Every dollar raised goes to help a family just like ours.
Kennedy Arney’s Speech at PedALS 2021
I was diagnosed with ALS in April of 2017 at the age of 54. I worked until January of 2018 before the disease forced me to stop working. My legs soon became too week to drive. Recently I lost the ability to walk short distances with the aid of a walker, and now require a wheelchair to get around. Each step in the progression of the disease brings new challenges. It gets more difficult to roll over in bed, more difficult to take a shower and to do the everyday things that I used to take for granted.
I am blessed to be married to a wonderful, dedicated and loving wife who cares for me. Blessed by family and friends who drive me to and from places, like the ball park to watch a game. Blessed by those who helped build a ramp at my house as well as theirs to allow me to visit and stay as a guest.
My family has been blessed to be involved with the Susan Mast ALS Foundation. The monthly support group meetings are fantastic! We have had the opportunity to share our story and hear the story of others that have gone through or are going through the same things. There is a wealth of knowledge about the challenges that ALS brings that is shared amongst the group during the meetings. We are also given several easy to prepare meals to take home each month.
The Susan Mast ALS Foundation has provided our family with equipment from their loan closet such as a recliner lift chair, a Hoyer lift, shower chair, suction cup grab bars for the shower, a manual wheel chair and an electric wheelchair that was provided until my fitted electric wheel chair arrived. They also reimbursed us for the materials to build a ramp through the MyTurn Project Fund.
I have faith that God can cure me because his name is above all names and above ALS. I just don’t know if that’s God’s plan for me. I’m trying to make a difference by raising awareness about ALS, the need for funding family support services and the funding of research to find a cure. ALS patients and families need all of the Hands & Feet of Jesus working to cure ALS.
Ephesians 6:7 – Work with enthusiasm, as though you were working for the Lord rather than for people.
Colossians 3:23 – Whatever you do, work at it with all your heart, as working for the Lord and not people.
Stumbling upon the Susan Mast organization a number of years into my journey with ALS has been, simply put, a tremendous support. The monthly group meetings are well run and allow quality conversation where you can gain helpful ideas as well as support others walking through this hard … you are not alone.
The staff here are such a help with resources, equipment, ideas and just provide a genuine, from the heart desire to come alongside. It can be such a confusing and overwhelming road; here’s a reprieve to get some much needed encouragement.
It was Dr. Weaver who said it the first time I heard it. She was talking about anesthesia when they were prepping my wife Laura for her new PEG tube. When I asked her how she was going to use anesthesia without removing the external ventilator from Laura’s nose, she responded, “Not sure yet – each time is a new rodeo.”
We have modified that phrase for the purposes of describing the journey we have taken together with ALS – each day is a new rodeo. Some days we are just trying to stay on the horse.
Our journey started early in 2017 when Laura discovered she was having trouble buttoning buttons. By November she had trouble lifting her arms and ended up getting neck surgery to address what they thought was a “compressed nerve.”
It was not until 5 months later in March of 2018 we learned that Laura had ALS, and that news changed our lives. Laura has the “bulbar” type of ALS and was quickly placed on a breathing machine which she is on 24 hours a day now. Her arms no longer work at all, she has a feeding tube, and uses a power wheel chair for mobility.
Not long after our first clinic visit in April, we heard from Julie Snelling at the Susan Mast Foundation about a ramp that was getting donated to them and asking if we could use it. At the same time, an engineer volunteered himself and his engineering crew to come install it. Within 30 days, we had a new ramp in front of our home thanks to Julie and her connections.
But that was just the beginning of how Julie and the foundation have supported us on our journey. It became apparent by summer that stairs were no longer an option for Laura, and that is where our only shower is. So Julie encouraged us to apply for a My Turn Grant to help remodel our tiny downstairs half bath to accommodate a portable shower for Laura.
We recently competed that project thanks to help from The My Turn Grant and help from friends. Julie also advised us to check out SarahCares for showers for Laura as sort of a “spa day” in between portable showers. Julie then helped us with several other needed items along the way like a Baby Monitor, Respite care (which we use every month), Pam’s monthly support group and food from their freezer.
Last week, we were at clinic at Spectrum when our occupational therapist recommended an air mattress to help with avoiding pressure sores for Laura. When the request came in to Susan Mast, Julie was able to get back to us an hour later saying that the mattress was on its way to our home. I told her that I think I experienced a little whiplash from the fast response.
We are so grateful for the whole staff who have been amazingly responsive and proactive during what has been the hardest journey of our lives. In this, and in many other ways, we are grateful that the staff at the Susan Mast ALS Foundation is on the journey with us even on those days that journey feels like we are in the middle of the rodeo – they are cheering for us!
– Laura and Bill Dodge
The Susan Mast Foundation has given me significant support in many ways on my ALS journey. The people who work there are compassionate and understand the needs of families with ALS because of their own personal life experiences. They have provided items that I needed to maintain quality of life. For example, when I required a power wheel chair to get around, I had to schedule an evaluation and then wait 6 weeks after that before my wheel chair arrived. In the meantime, the Foundation delivered a power chair to my home for me to use. It was such a blessing! We plan to share our equipment with them so they can bless others with it.
The Foundation also facilitates support groups that I have been able to attend in Grand Rapids and Holland. At those meetings, we are encouraged by the facilitator to talk about our challenges and blessings. We have the opportunity to bond with one another as well as inform each other about equipment or treatments that have helped us have better lives. We are so thankful for the Susan Mast Foundation!
– Dave Seigers
In October of 2017 we found treasure, the Susan Mast ALS Foundation. After a 2 year search to find answers as to why my body was becoming more and more useless, we finally got a medical diagnosis – ALS. It was not a diagnosis we wanted but it was a relief to find the reason this deterioration was happening. Soon after receiving this diagnosis we found the Susan Mast support group. Here were people who understood what we were going through – it felt like an oasis in a world of unknowns.
Our new family was made of other ALS patients, their caregivers and people who had a family member with ALS. With this carrying family we found much needed support. There is a loan closet that frequently has items that we need. There are respite funds that give my husband a break. There is knowledge about other resources. There is so much.
Another support is what we get from each other with the caring guidance of Pam Van Vliet and Julie Snelling.
Our journey is one day at a time. I can’t imagine this journey with the endless support we have found here.
– Lureen Mullaly
“Just wanted to thank you again for the use of the portable 4 foot ramp. Yesterday a neighbor hosted a group of 8 ladies for brunch to “bid me goodbye” from the neighborhood. Some shoveling was done to clear the way and the ramp put in place. It worked great! It was such a boost to me to be able to go to another home and enjoy their hospitality.”
“I met Ross Mast at my very first ALS Support Group Meeting. My first experience feeling the awe of knowing that loving people would continue to help us thru this journey even after their battle is lost.
Even while their grief was fresh; Ross, Amy, Elisa and Cynthia are there to give advice, hugs and hold our hands. They stress the need for respite for the caregivers. Susan’s fund was developed to ensure that quality care is available so caregivers can recharge.
It is important that this fund is replenished to ensure that it remains available until a cure is found.”
– Lori LaPointe
“I want to thank you again for the Schwan’s delivery. Countless people have asked what they can do to help and it becomes more on my plate to try to think of something. Some people have taken the initiative to bring over a meal but with my husband limited in what he can eat and my kids being picky I have sadly had to throw food away. Schwan’s is so wonderful in that I can choose something I know my family will eat. And I was so impressed with how respectful the driver was, promising to be available if I want him to come back but not hound me. Schwan’s products were quality and took care of all the prep work. It provides so much peace to know I have a meal on hand that will help and not give me more to do. Thanks for all your help.”
“The Susan Mast Foundation is an important member of our team as we navigate the challenges of ALS. Their dedication and compassion is evident: they’ve “been there” and know first-hand what it takes.
The programs and services of the Foundation have all been very welcome and needed resources for us. From the loan closet, the meALS program, the respite program, to the fun events – the people at the Foundation have been there for us.
Our deepest thanks to the Susan Mast Foundation, whose tireless efforts are helping so many, and for making sure we know “we are all in this together.”
– Kari Basney
“My name is Jim Berry and I was officially diagnosed with ALS on May 13, 2016.
Before I was diagnosed, I was always an active person. In my younger years, I ran marathons, raced in triathlons and rowing regattas, skied several black diamond slopes and climbed several mountains. Never in my wildest dreams given my active life style did I ever think I would end in a wheelchair all day.
Now that I have ALS, I feel very fortunate to have met Julie Snelling and Ross Mast from the Susan Mast ALS Foundation. They have been a huge help with learning to live with ALS. Not only are they providing funds to help offset my personal care costs, they have provided invaluable insights and connections for my wife Barb and myself as we learn to live with ALS. We look forward to watch as they grow the Susan Mast ALS Foundation to help more ALS patients like myself in the future.”
– Jim Berry
”The Susan Mast Foundation is doing great things for ALS patients and families in Southwest Michigan. Whenever I have needed something, whether it be a transport wheelchair or respite care to give my wife a chance to get out of the house, they have been there to help. I can’t thank them enough for giving their time and energy to serve the ALS community.”
– Scott Matzka
“Hi! My name is Dawn and I was diagnosed with ALS on March 29, 2016. Pictured is my loving husband, Larry, for over 25 years and our sons, Brandon (age 15) and Tyler (age 9). They help me so much every day. A lot has changed physically since that day. A friend, who is a nurse, comes to help me once or twice a week with hygiene and getting dressed. Soon, Larry will be back to working 7 days a week and on call 24/7. We are trying to figure out what to do. I am very thankful for family, church family, friends, and Julie at Susan Mast ALS Foundation. She was the first person who I felt could relate to what I am going through. Julie has been so helpful with meals and helping to find equipment to borrow.
My theme verse: Proverbs 3: 5-6. Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge him, and he will make your path straight.”
– Dawn Richardson
A little bit about our family: Jennie is a 38 year old mother of four kids aged 18, 15, 8, and 6. We live on her grandparent’s farm in Athens, MI. She began to notice symptoms in August of 2016 and was diagnosed with ALS in January 2017. This disease has changed our lives in a lot of ways as Jennie is now wheelchair bound and requires around the clock care. We didn’t have a lot of time to react as this caught us by surprise and progressed quickly. We soon realized that there were a lot of things we would need help with and equipment that would make life easier for Jennie. The Susan Mast Foundation has loaned a lot of much needed equipment. We would not have been able to acquire or afford to buy all of this ourselves. The Foundation has provided lifts, slings, chairs, mattress, food, respite funds, and other helpful items. Julie has been so responsive in making sure we have what we need. The Susan Mast Foundation has truly been a blessing during this difficult time. Thank You!
– Mark Williamson
“For me, it was hard to first accept assistance from friends, family and foundations like yours. However, I’m so glad I did and was able to meet so many wonderful caring individuals with such huge hearts! Keep up the good work!”