An activist from Warwick plans to bring primary immunodeficiency awareness to Rhode Island – not in small steps but with a mile-long walk in Warwick City Park on Sunday, September 8, beginning with registration at 8:30 a.m. and concluding with a ceremony at 11:15 a.m.
Lois Crudden, the walk’s organizer, is personally connected to the cause.
She was diagnosed at age 50 with Common Variable Immune Deficiency (CVID), one of more than 300 forms of primary immunodeficiency (PI) diseases that results in a severely weakened immune system; her body is subsequently left vulnerable to infection. PI, which can present itself at any age regardless of gender, is a genetic, non-contagious disorder that often goes initially diagnosed – a result of many doctors being unprepared to screen for the disease, or even think to look for it.
Doctors told Crudden that her diagnosis came at a critical time; had treatment been delayed further by even a month, she almost definitely would have lost her life. Now 65, Crudden has spent years advocating for PI education and research. Her 50 years of misdiagnosis, paired with the experience of being told she almost came close to death, have given her a “passion for helping people” that has resulted in five years volunteering with the Immune Deficiency Foundation (IDF), a national patient organization founded in 1980 that aims to improve the diagnosis, treatment, and overall quality of life for those affected by immune deficiencies.
Crudden hopes to bring a walk for PI to the Ocean State – the nearest walk, held in Boston, may not be as accessible to those in Rhode Island.
“It’s mainly to make people realize that this is a real disease,” said Crudden, who says that the fact she doesn’t look outwardly ill poses a challenge when trying to have her disease taken seriously. Constant illnesses and hospital trips had been a part of her life for as long as she can remember, and her reason for planning the walk is to raise money to improve immunodeficiency research to save others from that fate. “I don’t want anyone to go through the sickness, the hospitals, the pain I went through, and then be told they’re a hypochondriac,” she said.
Crudden receives gamma globulin treatments once every four weeks, which means her antibodies are replenished in order to strengthen her immune system. Though now armed with a solid diagnosis and undergoing treatment, she still lives with the effects of constant illness, which only fuels her desire to continue supporting research for those like her who struggle with the everyday impact of having an immune deficiency.
Her goal for fundraising is $10,000, with $2,461.17 raised so far as of press time. All donations made to her online donation page, www.walkforpi.org/warwick/loiscrudden, will go to further the IDF’s mission of supporting those living with PI. She is also currently searching for volunteers to aid with registration and to assist during the walk.
Registration for the walk will begin at 8:30 a.m. at City Park, followed by a welcoming ceremony at 9:45 a.m. The walk, which will take place over a little more than a mile, begins at 10:00 and wraps up with a closing ceremony at 11:15. Also hosted at the walk will be a 50/50 raffle, gift basket raffles, and a bake sale. Bottled water and light refreshments will be provided, and on-site restrooms will be available.
At the walk, Crudden will also be selling $5 tickets to the Preview Gala at Boscov’s at the Providence Place Mall on September 26th, which takes place from 10 a.m. to 10 p.m. Those attending will receive free refreshments and the opportunity to be the first shoppers at the new Boscov’s, part of family-owned department store chain with nearly 50 locations in the country.
Primary immunodeficiency diseases can affect people of all ages, too. Michael Mollis, a 4½-year-old from North Kingstown, was diagnosed with severe combined immunodeficiency (SCID) soon after birth. SCID results in a damaged or completely absent immune system, which means that only Michael’s parents and doctors can have contact with him. Michael and his parents will be attending the Walk for PI, with the use of a protective bubble that will shield Michael from infection.
“So many lives are being saved from raising awareness, and from the fundraising for this testing to be done,” said Jeanette Mollis, Michael’s mother. Michael, who was recently matched with a bone marrow donor, will soon begin the process of screening for a bone marrow transplant. While a person with SCID may have trouble fighting off even the common cold, according to Jeanette, medical advancements have made it possible for those afflicted to receive life-saving treatment. That’s why research funding is so crucial; without a proper diagnosis and the opportunity for early treatment, those with PI may not be able to survive. Bringing awareness to the Ocean State means that those in the community will have access to educational materials and the opportunity to support a cause that is often not given enough acknowledgement.
Interested in supporting the cause? Donations can be made online at www.walkforpi.org/warwick/loiscrudden. If you’re interested in volunteering at the walk or in purchasing a ticket to the Boscov’s Gala Preview, contact Lois Crudden at (401) 732-5677 or firstname.lastname@example.org. For more information on PI, visit the Immune Deficiency Foundation’s website at primaryimmune.org.