Fuller Center cyclists pedal 3,900 miles to assist Windham resident with ALS

Fuller Center for Housing cyclists gather before a leg of their
3,900-mile coast-to-coast journey that took six weeks to
complete this summer. While in Windham, the riders helped
build a new porch for a resident who has ALS and assisted
in making other home improvements for local seniors as
volunteers for the Sebago Lakes Region Fuller Center
for Housing. COURTESY PHOTO       

By Ed Pierce

It’s said that when you give of yourself, that is when you truly give. For 21 cyclists completing a 3,900 mile ride from Seaside, Oregon to Maine on behalf of the Fuller Center for Housing last weekend, they gave everything they possibly could by finishing their journey.

Fuller Center cyclists rode from Fryeburg to St. Joseph’s College in Standish on Thursday, July 28 and then enjoyed a police escort as they made their way to an overnight stop at the North Windham Union Church. There they teamed up with a group of volunteers from the Sebago Lakes Region Fuller Center for Housing on Friday, July 29 for a building project to add a new front porch for John and Linda Gregoire of Windham and other projects.

John Gregoire is wheelchair bound and paralyzed and is unable to speak. He communicates through a laptop and has been suffering from ALS for the past 15 years. In creating the new porch for the family, Fuller Center cyclists and local volunteers updated the Gregoire home to make it safer and more accessible for John, who is now able to roll out onto the porch for fresh air when needed.

“Thank you to the Sebago Fuller Housing Foundation for helping those who can no longer care for their homes and just need an extra heart and hand to bring their home back to its glory,” said Linda Gregoire. “All with consideration of John’s needs, nothing has been overlooked to make this project safe and comfortable for him. This group has given us more than a porch with a second means of egress, they’ve given us a feeling of being cared for and loved. John and I are beyond grateful, humbled and in awe of the kindness showered on us.”

In all, the cyclists and Sebago Lakes Region Fuller Center volunteers worked on eight different housing projects while in Windham before the remaining riders departed for Portland on the final leg of their six-week cross-country ride on Saturday, July 30.

In reaching the Atlantic Ocean, the cyclists wrapped up a coast-to-coast adventure that spanned 14 different northern-tier states and included visits to all of the Great Lakes and an array of locations such as Glacier National Park in Montana, Niagara Falls in New York and Lake Champlain in Vermont.

In Burlington, Vermont, Sebago Lakes Region Fuller Center President Diane Dunton Bruni of Windham joined the group of cross-country cyclists and rode with them on the final trek over to Maine.

The Fuller Center Bicycle Adventure was founded in 2008 as a way to raise funds for The Fuller Center for Housing’s work of partnering with families in need to help them have simple, decent places to live through home repairs and new home construction – through dozens of Fuller Center covenant partners across the United States and in 20 different countries.

Since its inception, the Fuller Center Bicycle Adventure has raised more than $3.8 million for the Fuller Center’s work through the years, including more than $500,000 raised in 2022. Riders also are instrumental in bringing attention and public awareness about the nonprofit’s work through speaking engagements, media coverage and simply by talking with people they meet along the way.

The Fuller Center for Housing was founded in 2005 by the late Millard Fuller, who also created the Habitat for Humanity International initiative. It seeks to end substandard housing and improve the lives of those who may never have owned a home. The group partners with local agencies and volunteers to build or repair homes with partner families who participate in the work and pay the costs forward on a no-profit, no-interest basis that they can afford.

During this year’s cross-country ride, the orange-clad cyclists participated in seven build days at stops they made at Fuller Center locations. In the U.S. alone, there are more than 80 Fuller Center sites, and the number continues to grow every year.

To learn more about project eligibility, to become an active volunteer or to make a charitable donation, visit the Sebago Lakes Region Fuller Center for Housing’s website at sebagofullerhousing.org, send an email to sebagofullerhousinginfo@gmail.com, or call 207-387-0855. <

Jacobe's jersey keeps former basketball player’s hard work ethic and spirit alive

Jason Jacobe in 2001

By Matt Pascarella

Jason Jacobe was a star on and off the court - a Male Athlete of the Year and a Division 1 Athlete. He excelled in the classroom and was Valedictorian for his graduating class of 2002. Unfortunately, Jason was diagnosed with Amyotrophic Lateral Sclerosis (ALS) and passed away last year. Jacobe’s fellow teammate and friend, varsity boys coach Chad Pulkkinen, tells Jason’s story to the basketball teams each year to inspire his student athletes to follow Jason’s example. When Jason was diagnosed with ALS, coach Pulkkinen started awarding the Jacobe Jersey as a way to honor his hard-working athletes. This honor is now in its third year.  

“The first reason to start it was to show Jason we had guys thinking about him,” explained Pulkkinen. “He’s a part of our Windham family. I explained to those guys who Jason was as a teammate, what he brought to the table, how he treated people, how much effort he put into every sport that he played and that’s why he was very successful on the playing field and in the classroom.”

Diana Jacobe, Jason’s mother, is happy that her son continues to be honored. “I love that Chad thought so much about Jason and that he continues to do this,” Diana said. “My heart swells every time I see a picture of one of his players wearing the jersey. I love that people will remember Jason for being a hardworking, kind and caring person and not just an outstanding athlete.”

Jason’s wife, Elizabeth Myers said that continuing to acknowledge Jason is important to her and their daughter. “It’s great. it means the world to us.”  

Myers emphasized that the jersey goes beyond just acknowledgement but said it also creates an awareness factor about ALS, which is very important to her.

What do the players need to do to earn the right to wear the jersey? Coach Pulkkinen and his assistant coaches factor in stats for makes, misses, rebounds, charges, steals, deflections, etc.; pretty much the entire opportunity as a basketball player on the court. They give extra coach discretion points for non-stat criteria, like helping up a teammate.

Pulkkinen says it’s given the team a good edge during practices. Some guys are really fighting for it and others are trying to find their way. It’s also been incorporated in the First Team/JV practice. “I thought it was important to bring that education. We explain the Jason Jacobe story to all incoming freshman, and it’s fun to do that; I still get choked up talking about him to those guys.”

The jersey is a representation of the family aspect that basketball and being on a team creates. It’s more than basketball; it’s about the relationships that are established from season to season, year to year. The jersey represents that story of the guys they get to play with, embrace and call teammates.

Winners of the jersey get to wear it during practice for one week and it is a real source of pride for the players.

“It means a lot to me,” explained three-time winner, senior Chris Naylor. “It’s really something I try to get every week. It makes us work hard at everything we do. It really motivates us with everything in life; teaches good work ethic.”

Hayden Bilodeau, a junior stated everyone in the gym works for the jersey of the week. “We strive really hard for it,” he said. “The stories that coach tells about Jason Jacobe – he was a good person on and off the court, so it motivates me to be more like him.”

Pulkkinen added, “We lost Jason way too early and we can’t do much in that situation, but I think what we’re trying to do here by telling Jason’s story and what he was about is incorporated into our guys and into the Windham youth and community. It’s just forever holding Jason’s name to this sport, to this high school, to this Windham community that’s always been there to support him. I’m proud to have had Jason as a teammate, I’m proud to have known him for as long as I had. What he was able to do on the court and in the classroom is exactly what you want a Windham High School student to be.”

A Thanksgiving reminder to enjoy what we have, where we are now - despite challenges By Linda Gregoire

Linda and John Gregoire

The following is a letter that the editor, Lorraine Glowczak, asked the author to share with our readers. The editor offers the following introduction to that letter:

As most of us busily prepare and shop for the traditional Thanksgiving feast, we also tend to hurriedly go about checking off the “to-do” list that is a mile long. Sometimes, between the demands of work, family and other community efforts, we can get swept up into all the stresses placed upon us, losing sight of things that we deem important; gratitude and gathering with family (in whatever way family looks for you).

Linda Gregoire of Windham recently shared a letter with her friends regarding her own life as she and her family prepare for Thanksgiving 2017. Although I suspect she does not need an introduction to most of our readers, here’s a little synopsis for those who may be new to the Gregoire family journey.

On December 17, 2007, Linda’s husband, John was diagnosed with Amyotrophic Lateral Sclerosis (ALS). According to the ALS Associations, ALS “is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. ‘A’ means no. ‘Myo’ refers to muscle, and ‘Trophic’ means nourishment – ‘No muscle nourishment.’ When a muscle has no nourishment, it ‘atrophies’ or wastes away. ‘Lateral’ identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening (‘sclerosis’) in the region.” www.alsa.org

This hardening and atrophy eventually affects the muscles in the mouth and throat, making the ability to eat for the person with ALS difficult or non-existent. As a result, feeding tubes are put in place to provide the nourishment needed. Five years after his diagnosis, John was required to use a feeding tube.

Linda and John agreed to share her note with our readers on how they will enjoy their Thanksgiving feast in the midst of the challenges ALS presents. 

May the following letter provide a reminder to us all, no matter our own individual difficulties, to be joyful, happy and most importantly – grateful- despite it all.

“I was asked yesterday by the caretaker who installed a new tube feeder how we handle holidays that are celebrated with food. We all want to do whatever we can for our loved ones with a feeding tube to make life easier and normal, so I really appreciated her thoughtful question.

The last 10 Thanksgivings we’ve been faced with small incremental changes that we’ve adapted to because that’s what you have to do with ALS. I always say, ‘if you don’t go with the flow, you get caught in the rip tide.’ If anyone has had the experience of a rip tide you know what I mean - the more you try to fight it, the worse it gets. If you trust and swim in the flow, you’ll be safe. 

So, this morning after I started John’s feed and he fell asleep peacefully while his tummy was being filled, I realized how at peace he is with his current situation. In the beginning with his new tube, we struggled until we got him on a healthy formula. He still ate for pleasure by mouth, so a bowl of pistachio ice cream was eaten while formula was finding its way into his tummy. He had the best of both worlds.

I think the two saddest days for him was when he could no longer eat steak, one of his favorite meals. That came early on, as it’s so hard to chew. 

The next saddest day happened about a year ago when John would sneak a hand cut French fry when Matt [our son] and I ate at Elevation Burger. He choked so bad I almost thought of calling for help. However, once the choking passed he looked at me and shock his head ‘no.’ I asked, ‘No more for now, or no more forever?’ Tears welled in his eyes and I knew - no more forever. We both cried. 

The one thing he still can take by mouth and never chokes on is a small piece of communion bread and a sip of “wine” (grape juice) at church and, God willing, he’ll be able to forever. 

The families' dogs are thankful, too.

So as Thanksgiving approaches, it made me think how we’ve handled the holiday meal. We gather at my sister’s with as many family, friends and dogs as we can squeeze into her home - which can be 20-25 people and up to 9 dogs. 

The food has been mostly grown and raised by my sister and brother-in-law, which is a labor of love. It’s prepared with everyone in mind with oyster stuffing for some and regular stuffing for the rest of us. We all share in bringing what we can, enjoy each other’s company and catching up on life. Then we gather at the table, elbow to elbow and we remember our family that’s with us in spirit and give thanks for those we still have with us to love. 

John is seated at the table with his own spot and place card as he enjoys his ‘dinner’ too. He’s the only one allowed his electronic device because it’s for speaking and he’s the self-appointed one to keep track of the football game for the entire table. That’s as important as cooking the turkey.

We chat, pass food, laugh and, of course, we eat. 

Thanksgiving Dinner is more about who’s around the table then what’s on the table. We feed our bodies and enjoy the food but more importantly, we feed our souls with love and thanks for all we have. 

So, for all our tube feeders, join in the feast and give thanks and feed your soul on love and life. This is what I’m grateful for everyday of the year, not just the days of November. Happy Thanksgiving to you all and God bless you all.” Linda Gregoire

Editor’s note: As we enter the holiday season of giving, please remember to give a financial contribution in the amount that works for you on “Giving Tuesday”, November 28. Give a donation to your favorite non-profit organization or consider giving to John and Linda’s non-profit, Hope-JG. Hope-JG is dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and biomedical research. www.hope-jg.org.

AlliedCook Construction donates their time and provides hope for a Windham couple - By Lorraine Glowczak

John and Linda Gregoire have been counting their blessings every day. The most recent godsend came in the form of a local and well known construction company, AlliedCook Construction. This company donated a week of their time, resources and efforts in October to rebuild Gregoire’s crumbling garage floor. Not only was the garage unsafe, but it had shifted so much that the Gregoires’ “new to them” van could not be driven into their garage because it sits low to the ground. It isn’t every day a large construction company remodels a garage for free, but then, it is not every day one is diagnosed with a devastating disease that robs one of independence.  
 

“When you are in God’s business, he is in yours,” Linda said, referring to the way things have been going in their life the past nine years. In October, 2007 Linda’s husband, John, was diagnosed with ALS, or Amyotrophic Lateral Sclerosis, a progressive neurodegenerative disease commonly referred to as Lou Gehrig’s Disease. 

John has not let the extreme challenges that go with slowly saying goodbye to walking and talking disempower him. Instead, he uses his experience to help and serve other people living with ALS (PALS). In 2014, he and Linda created the non-profit organization, The Hope-JG Foundation. The organization’s mission is two-fold, “To establish a world class ALS/MS residence in Maine and to inspire and promote innovative technologies.” (www.hope-jg.org) A resource room will be a part of this residence, housing a recording studio which will use the VocaliD platform to record donor voices. This technology produces custom crafted voices for the speech impaired, making communication more human. (www.vocalid.co)

John is now in a wheelchair and uses a voice activated computer to express his thoughts. He and Linda travel all over New England to meet with supporters, PALS and their families to discuss fundraising, grant writing and networking ideas. They also travel to meet with innovators - people or organizations that promote innovative technologies and thinking. Additionally, they travel to Augusta during the legislative session to advocate for issues that affect health care. This extensive travel to advocate, promote hope, and build a home that will provide a meaningful and dignified life for PALS requires a van equipped to transport John and the electric wheelchair. Unfortunately, their “new” 2010 wheel-chair accessible van could not be driven into the garage. The garage is where the lift is located and is what John uses to get in and out of his home. Parking outside the garage works well in the summer, but the pending snow and ice this winter were concerns of the Gregoire family. However, keeping thoughts positive, they decided to make the best of it. After all, money is not easily had when there are other important costs associated with the medical expenses of having ALS. This is where AlliedCook Construction came into their life.

It all began with the preparation of a fundraising event for The Hope-JG Foundation that will occur in early spring 2017. John and Linda had been communicating with Saint Joseph’s College president Jim Dlugos regarding a space provided by the school for a public viewing of the film “Hope on the Horizon.” The film is about four individuals who hike the 48 highest peaks in the White Mountains in 24 days to raise awareness and funding for ALS. During the emails back and forth about this fundraising effort, Dlugos became aware of the garage disrepair. Concerned, president Dlugos visited the Gregoires and spoke to them about having the space renovated. “You do so much for others, you also need to think about your needs and let others help you,” is what the Gregoires recalled Dlugos telling them. Soon after that conversation, Dlugos was in a meeting with Matt Cook of AlliedCook Construction discussing projects at the college. During this meeting Dlugos approached Cook, asking him if he could assess the repairs of Gregoires’ garage.

A couple days later, Cook visited John and Linda. “It was a small project that made a huge impact,” Cook stated. “There was no way I would leave without helping John and Linda.” 

Cook was very impressed with the collaborative efforts of the other companies he reached out to and who also gave their resources for this project. These companies included Bob Grondin of R.J. Grondin, Inc., Jason Robinson of Dayton Sand & Gravel as well as Auburn Concrete. 

“It’s nice to give back to a community that supports you,” Cook continued, referring to the success of his Scarborough based 58-year-old company founded by his grandfather.   

It only took five days to restore the garage. During the re-construction, a big hollow hole underneath the cement where water had washed the ground away was discovered immediately following the removal of the floor. Needless to say, this made the garage a hazardous place to drive, walk or use a wheelchair. In fact, the lift itself was sitting on hollow ground.

John now has a safe and ice free way to get in and out of his vehicle and into his home. To celebrate

their labor and efforts, soup was prepared on the final day by Linda and shared with the three crew members who worked diligently all week. The crew consisted of Mark Blunden, Chris Monahan and Rick Dow. 

“This project was such a blessing to keep me safe and under cover as winter approaches. The Hope-JG Foundation work keeps us active. Being able to run out to a meeting, without navigating the crumbling garage floor to get to a cold van parked outside, is huge. We can’t thank Matt Cook, President Dlugos, and the team Matt gathered, enough,” John said, expressing his gratitude.

In a world filled with chaos, sadness and anger; the selflessness and compassion of a few individuals in a small town community is a reminder to never give up on hope. 

For more information about The Hope-JG Foundation, to make a donation, to support an innovator or to volunteer your services, please contact John and Linda at info@hope-jg.org.