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EVERYTHINGALS

Pathfinders

Everything ALS Pathfinders' vision is to empower individuals affected by ALS and their families. Our threefold mission focuses on:

Our main priority is to provide support for individuals with ALS, from offering care to seeking a cure. As an Everything ALS Pathfinder, we wholeheartedly welcome you into our community, a place where you will never have to feel isolated. This is a community where you belong, where your voice is heard, and your experiences are valued. Let's come together and provide unwavering support to help each other Live a fulfilling life despite the difficulties we may face with ALS.

1. Physical Empowerment: We are dedicated to finding practical solutions and resources to alleviate the physical challenges associated with ALS, aiming to improve the quality of life for patients as their conditions evolve.

2. Mental Resilience: We're here to support you at all times. Our goal is to improve the mental well-being of people with ALS, caregivers, and their families by providing ongoing support and fostering a sense of community. You are not alone in this journey.

3. Spiritual Support: By addressing spiritual concerns, we aim to provide a comprehensive approach to healing, ensuring individuals find solace and meaning amid the challenges they face.

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My name is Willard Blackwell. I was diagnosed with ALS in May of 2022. I had fallen while playing pickleball, which prompted the doctors to investigate my symptoms. As a professional singer and musician leading the Gator Nation Band, I have encountered daily challenges due to the loss of full use of my hands or legs. I no longer perform with my band but recently sang with friends. I still try to do the things I love as long as they don't worsen my symptoms. I have learned about conserving energy, and I try not to overexert myself so I can keep moving forward. I find joy in music and comedies – anything that brings a smile to my face. This experience with ALS has taught me a lot about maintaining a positive attitude while battling this terrible disease. Initially, I was reluctant to ask for help. My friend, Kathleen, noticed my hesitation and called in my soul tribe because she knew I needed more assistance. I understand that seeking help can be difficult, but it can also be incredibly rewarding. We don't have to go through this alone. It's much better to have support to help you navigate your way.
If you feel that I can support you on your journey, please don't hesitate to get in touch with me at willard@everythingals.org

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My name is John Hudacek. The day I received my diagnosis, I knew this could be the end or a new beginning. After spending the first three months being scared, I realized that the difference was in my mind and my attitude. So, I decided to look at this chapter of my life differently. Early on I saw that many of us pALS are looking for that ray of light breaking through the drizzling overcast. If you look hard enough, you will find it. I hope to share my life experience to help others find courage and resilience and develop the skills to help us cope while others find that cure. As a veteran, I can assist other vets find the resources that make a difference in this journey. I was diagnosed in November 2021 with a limb-onset, non-dominant arm. Slow progressing, just now starting to weaken my other arm. Now is the time to discover the hidden strength in each of us. I am honored to hold your hand on this journey. You can contact me at johnhudacek@everythingals.org

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My name is Kathleen McCallum, and for the past two years, I have been helping my friend Willard, who was diagnosed with ALS in 2022. I asked him if he wanted to do a documentary to help him navigate his ALS in a creative way and bring hope. Our Journey of Hope documented the positive steps we took to help Willard’s symptoms, extend his time, and detox his body in hopes of reversing his ALS symptoms.

Prior to helping Willard, I fought for my mother when she had breast cancer and, later, level 4 stomach cancer. At the end of her life, she also had Lewy Body Dementia. My dad had Alzheimer’s disease, and we participated in many Alzheimer’s fundraisers as well. I have studied alternative healing since the 1980s, and I am a certified microbiome nutritional coach.

My goal is to bring more hope to those suffering from this horrendous ALS disease and to bring more awareness about ALS to the world. There is hope, and if I can help provide it for you, please contact me at kathleen@everythingals.org

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My Name is Faith Oremland. My son was diagnosed with ALS in January 2022.

If you are dealing with the challenges of being a parent to a child with ALS, issues with family communications, and learning how to live positively in the face of ALS, please get in touch with me at faith@everythingals.org Being an Everything ALS Pathfinder gives me the opportunity to help others on our ALS journey. You are not alone!
It's about sharing our stories, listening to each other, providing helpful information, and being there with compassion and love. "I am committed to doing whatever possible to help my son and other people with ALS and their families live their best lives. We can do this working together with hope and positivity!"

My career was in health data information systems. I am an amateur storyteller of tales that teach life lessons. I love working with the people at Everything ALS and also volunteer with Compassionate Care ALS (CCALS) Mothers of ALS and the I Am ALS Legislative Affairs Team.

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These days, I live a purpose-driven life! I do what I can…WHILE I CAN!

If I can make your journey any easier, or if you have any questions, let me help you find answers. My hope is to be the resource you need.

Feel free to contact me at joe@everythingals.org

I spent 15 years in radio and 25 years in the Music Industry (in Nashville). Through the years, I’ve worked in Finance and Real Estate and owned a bakery! Currently, I live in Baton Rouge, LA.

That was what I DID…it wasn’t WHO I AM! I was diagnosed with ALS in 2012…thankfully, it’s a very slow-progressing form. When ALS took my speaking (I slur!), my whole world changed, and I lost my career. For a guy who’s always made his living talking…this is a difficult pill to swallow. But I am more than just my diagnosis! My skill set can STILL be put to good use! Even though MY speech is failing, I try to give ALS Patients a voice!

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Contact me at joe@everythingals.org

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My name is Janie Gobeli. When I received my diagnosis in 2021, the first thing I said to my loved ones was that I was going to fight! My husband calls me his fierce warrior. I knew I had a choice to remain positive or let ALS take everything from me, including my attitude. So, I decided to be positive, to have faith, hope, love, and Gratitude. It is my hope to inspire others to remain hopeful in our journeys. I live each day to its fullest. I enjoy travel, concerts, and having fun. I’m not going to let the ALS stop me because I have a lot to live for, including my grandson, who was just born on June 1st. It hasn’t been an easy road by far, but I’m here if you need the encouragement, hope, and support to keep fighting! You can contact me at janie@everythingals.org

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My name is McFinn Lovere. My experience of reversing my ALS put me on the
path to being of service to others with this devastating disease. At my weakest point I was only able to move two fingers and my head. I know what 24-hour daycare means. I have experienced the feelings you take on from isolation. I had one caregiver who was excellent. I had another caretaker who looked at it as a job, not compassionate service. It is so important for your mental stability to have someone caring for you who understands the stress ALS creates for pALS and their families. I hope my and my family's experiences will help relieve some of the Stress ALS brings into your life.

Your Everything ALS Pathfinder, McFinn, is reaching out; reach back. mcfinn@everythingals.org

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I’m Michael Montemayor, and I have a wife and three kids. We live in Washington State. I graduated from Washington State University in 2003 with a business degree. I was diagnosed with ALS in July 2023.  

 

A lot has changed for me and my family since my diagnosis. I struggle to do some of the everyday simple tasks, but there are still a lot of things I can still do. What keeps me going is my trust in God, knowing He has a plan for me and that He is in control, which gives me peace.

 

I also have lots of help and support from family and friends. My plan is to keep fighting against ALS and not let it control my life. I have met lots of other ALS patients who have been a blessing to me, and I hope to be able to help others with ALS as well. God Bless!!   

 

michael@everythingals.org

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My name is Shawn Penno. I think my years of work in the field and advocating for workers will translate nicely into helping pALS with their journey. Please reach out if you need someone to 'vent' to, help with problems, or just someone to talk to alleviate the isolation.

I live in BC, Canada, and have been a care aide for 25 years, 2 in long-term care and the rest in the Community. I was diagnosed in September '23 with limb onset ALS after 16 months of 'investigating,' with a diagnosis of carpal tunnel, thoracic outlet syndrome, and such.

The devastation of hearing THAT Dx—we were hoping for anything but that—really made me soul-search. Do I want to Drop everything and make a bucket list, or…I decided that my work is what really fulfills me; the gratitude I get from my clients is priceless. Work gives me the focus to stay positive and live in the moment.

Something I teach in my class is we want to "enable our clients, not disable them.” This has taken on a whole new meaning now that I'm the one becoming disabled! I WANT to do what I can while I still can! I even built my own wheelchair ramp right after my Dx while still having the arm strength to do it!

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I can be reached at shawn@everythingals.org

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