Supported by Milecki and other advocates, the ALS Prayer Group prayer program is now being offered throughout the Diocese on Mondays at 10 a.m. online. Access to the one-hour program can be gained by emailing [email protected]; Milecki, group facilitator, who has ALS himself, will respond to emails and provide the Zoom login link.

While the format varies weekly, participants are greeted with Christian music beginning at 9:30 a.m. The prayers that follow may include recitation of the Rosary with intentions offered by participants, the Divine Mercy Chaplet, Scripture reading and discussion, dialogue about different saints and books associated with suffering, guest appearances, testimonies and more.

“With the support of Bishop David M. O’Connell, C.M., as HIS president, [its] board of trustees has reasserted a commitment to its broader purposes and has begun to explore other activities to put its full mission into practice,” said Brenda Rascher, executive director of the diocesan Office of Catholic Social Services, and Bishop’s delegate for the HIS board of trustees. “HIS has also recognized that service and support are needed at all levels of life for those who struggle with intellectual and/or physical challenges,” she said.

Physical limitations, spiritual opportunities

The motor neuron disease ALS interferes with the communication between the brain and the muscles, leaving those who suffer from the disease often unable to move their limbs. ALS can even cause paralysis that migrates to muscles in the torso and above, making speech difficult or impossible. To date there is no known cure.

While most of those with the disease are not impacted mentally, the physical effects can make attending Mass or prayer groups in person an insurmountable challenge. Milecki was determined to find a means to connect spiritually with fellow sufferers of ALS.

“I looked around for ALS prayer groups … all were Facebook-type sites where you would post something and people would reply,” he said. “They were lacking the live contact with others afflicted with ALS. I remember reading from St. Louis de Montfort that ‘one who says his Rosary alone only gains the merit of that one Rosary. But if he says it together with others, he gains the merit of each Rosary.’ What a great way to increase the power of the Rosary against the devastation of this disease. So why not start our own live prayer group?”

Milecki approached Kathy Valentino, whom he knew through her social work for The Joan Dancy & pALS Foundation, which he said “already holds a regularly scheduled Zoom session where ALS patients and their caregivers are provided with a means to voice their feelings and experiences. This served as a model for the prayer group. So, the logical next step was to discuss this with Kathy … [who] liked the idea and quickly picked up the ball and ran with it.”

Enter the HIS, which Bishop George W. Ahr founded in 1976 with the mission “To promote and provide spiritual, educational, recreational, social, and cultural services to special needs children, adults and their families.” When Rascher received a call from Valentino inquiring if the Diocese could help provide a virtual prayer service, she immediately thought of HIS.

“She inquired if we had such a prayer group,” Rascher recalled.  While none existed at that time, Rascher was able to suggest that one could be set up through the HIS.

After several meetings with Valentino and Milecki, a request was made to the HIS board of trustees, who unanimously approved development of the prayer group.

“We saw this as an opportunity to expand services to the special needs community in the Diocese of Trenton,” said Linda Dix, HIS board of trustees chair. “I was moved by David’s desire to bring the ALS community together in prayer and music.”

She said of Milecki’s enthusiasm and faith, “Each week HIS is inspired by his personal commitment to engage through prayer with those who have ALS.”

Diocesan launch

With the Bishop’s blessing, the pilot prayer meeting was held Nov. 21. “We have a small, dedicated  group at this point,” said Milecki. “The feeling is that we have a common cause that brings us together and helps strengthen our faith in God as we go through this difficult journey. We do believe that ‘For where two or three are gathered together in my name, there am I in the midst of them’ – Matt 18:20.”

“It has gone very well, and we now want to open it up to anyone who is dealing with ALS – the [patient], the caregiver and family,” Rascher noted. “While sponsored by the HIS and open to anyone in the Diocese, we are not going to turn anyone away outside the diocesan counties. If they are dealing with ALS, they are welcome.”

Valentino echoed Rascher’s aims. “This prayer group gives our families and caregivers a chance to pray with others who understand that they often feel forgotten or left behind. It reminds them that God is always with them. The best part is they can participate from their homes without the burden of traveling.”

Being given a diagnosis of ALS, Milecki added, “is extremely difficult to accept and deal with. It challenges everything you believe. Every day is an emotional roller coaster. But during the time we are together in prayer, we can find some time of peace and consolation with Christ and each other. It strengthens us to walk this journey with Christ.”