CurePSP Tribute Funds

Barbara (Horn) Collins (94), passed away peacefully, surrounded by family, on Sunday June 23rd. Barbara (Bobbie) was born in Springfield, MA Feb. 25, 1930, daughter of Norman and Elizabeth (Scoville) Horn. She grew up in Scarsdale, NY, graduated from Smith College in 1951 with a BA in music, and was a member of the Smithereens a cappella group. After graduation, Bobbie edited music textbooks for Silver Burdett Publishing in NYC. In June 1953 she married William Collins, MD (Bill) and after three years in Ann Arbor, MI they settled in South Dartmouth, MA for the next 32 yrs.

Bobbie was a woman ahead of her time. In 1973 she founded a docent program at the then sleepy New Bedford Whaling Museum, and over time became Assistant Director. She, along with her talented colleagues, transformed it into a universally respected destination for cultural history. She served on the Board of Trustees of New Bedford Child and Family Services for 20 years, including a term as President. She was a trustee at St Luke’s Hospital and Compass Savings Bank. Bobbie strategically followed the motto “well-behaved women rarely make history” yet she made a lot of really good history in our community.

As our matriarch, she encouraged a love of nature, intellectual curiosity, and an awareness of the world. She loved art, music, live theater and museums. She loved to travel, and adored the Southwest, her love of which led to her presenting to the entire third grade. She enjoyed the outdoors (despite being bitten by a rattlesnake as a teenager) and introduced us to skiing and backpacking in the White Mountains. Being outnumbered five against one, she acquiesced and provided money for Mister Softee and later, Pony Boy at Anthony’s Beach. She also made elaborate Halloween costumes and put on memorable birthday parties.

Our mother was phenomenally supportive. She encouraged us to think for ourselves and showed us how by remaining unconvinced when we insisted that the Monkees were the greatest band ever. Mom recharged by working in her vegetable garden. Approachable, she took in our friends, who all became extended family to her and Dad. She was an active listener, often able to hear and understand across generations. She loved unconditionally and was an amazing role model.

After a three year stay in Hawaii, Bobbie and Bill moved to Port Ludlow WA to be near family. They stayed active in the community. Mom was diagnosed with Progressive Supranuclear Palsy (PSP) in 2021. She faced it like she faced everything in life with grace, determination, strength, humor and a good bit of New England stoicism.

Bobbie was preceded in death by the love of her life, Bill Collins, in 2009. She is survived by daughters Nancy (Tim) Karle of Poulsbo, WA and Kathy (Bret) Gagliardi of Fox Island, WA; three sons Jim (Yuhui) Collins of Annandale, VA, Bruce (Kim) Collins of Albuquerque, NM and John (Michele) Collins of Jacksonville, FL. 13 Grandchildren: William, Laura, Logan, Julie, Emily, Margaret, Owen, Jason, Brandon, Nicholas, Samuel, Rachel and Abigail; and seven great grandchildren Jade, Vanessa, Natalie, Desmond, Enzo, Piper and Graham; and a sister, Betsy Baker of Westwood, MA. We will all miss her very much, but our hearts are full of memories, and knowing that she and our dad are together again.

Our family gives much thanks and appreciation to the nurses and staff at Harbor Place in Gig Harbor, WA and Virginia Mason Franciscan Hospice in University Place, WA. In lieu of flowers, donations can be made to her tribute fund here or by mailing a check to CurePSP, 325 Hudson St. FL 4, NY, NY 10013 with her name in the memo line.

Catherine Carol (Kogut) Dudek, 89, died Saturday, March 1, 2025 at her home in Clayville, N.Y. with her loving family by her side after a long battle with PSP.

She was born October 18, 1935, in Clayville, NY, the youngest of eight children of Joseph and Mary (Zajac) Kogut. Carol would often reminisce about growing up on the family farm, and graduated high school third in her class. Carol met Stephen E. Dudek on a blind date on Valentine’s Day 71 years ago, and the couple married on May 28, 1955, a blessed union of nearly 70 years. In the years that followed, Carol dedicated her life to helping others through her career as a social welfare examiner and volunteering at various organizations in the community. She was a woman of deep faith and proudly shared that faith with others.

Carol’s family was her greatest joy, with whom she shared and taught her many talents, including her green thumb (planting many vegetable and flower gardens), making delicious polish foods (her pierogi recipe has been shared through 3 generations) and sewing (making clothes, curtains and doll clothes). Over the years, Carol threw many pool parties, enjoyed outdoor activities, road trips and attended the many school activities and sporting events of her children, and later her grandchildren.

Carol is survived by her loving husband, Stephen, her five children, 17 grandchildren, 16 great-grandchildren and a great-great grandson, along with numerous other family members and lifelong friends. Together, Carol and Steve created a legacy of close family bonds, traditions and faith that spans generations. In her honor, her family wishes to support ongoing research for PSP. Carol's hope was that her memory would live on by living with kindness, supporting one another and embracing the values she cherished. May we all strive to live our lives as graciously as Carol did.

Bright and witty with a sense of humor that delighted her many friends, Carol entered this world in Baltimore, Maryland on March 6, 1943, the daughter of Myrle (Peggy) and Wesley (Larry) Algire. Her mother, like many others at the time, was a single parent to Carol due to her father serving our country during those war years. Being an only child, Carol and her mother remained close and devoted to one another throughout their lives.

A graduate of Eastern High School in Baltimore, where she honed her well-versed secretarial skills, Carol entered the Baltimore business community eventually being hired as the private secretary for Don. Love unexpectedly blossomed in their office environment and, after a couple of years, they eloped and embarked on a 58-year love-filled marriage. They renewed their vows with a complete church ceremony and wedding reception in November of 1989 on their 25th Wedding Anniversary.

Never having been blessed with a child of their own, Carol and Don were blessed as Godparents by many of their friends and they truly relished that role throughout the years.   Although she only worked with Don in the office for one year after marrying, Carol was always a vital part of his business. She accompanied him on business trips, domestic and foreign, never complaining about those early morning calls for the "four hour miracle" of hair and make-up which, coupled with her inherent charm and sense of humor, provided everything befitting the classy lady and gracious hostess that she was.

Carol's favorite things in life revolved around her relationships with her friends and spending time with them in both Maryland and Florida. Although not much of an athlete, Carol proved to be most proficient in the art of candlepin bowling, winning several trophies despite admitting to enjoying the social aspects of the game more than the game itself. An enthusiastic supporter of all sports she was particularly loyal to her Baltimore Ravens and Orioles.

Carol's father, Larry, was an accomplished musician serving as drummer for the Pier Five Dixieland Jazz Band, a noted band in the Baltimore area. Carol and Don made a point to attend as many of Larry's "gigs" as possible and become avid Dixieland fans.  Carol was diagnosed with Lymphedema and bone-on-bone Arthritis in both legs in 2017 which caused her periodic falls and required her using a walker in 2018 and eventually an electric wheelchair in 2019. Initially thought to be Parkinsons disease, her diagnosis was changed to Progressive Nuclear Palsy and she came under the treatment of Dr. Alexander Pantylet at Johns Hopkins in Baltimore. Carol suffered through the many occupational, speech and physical therapies as well as the unending doctors appointments and lab tests in search of a solution. It gradually took command of her body and she never complained.  On Sunday, February 19, 2023, Carol closed her eyes and at 10:15 am, with her loving husband, Don, holding her closely, she took her last breath. We pray that she rests in peace in the arms of the Lord and that one day a cure for this dreaded disease is found.

We thank all of the medical professionals who are doing their best to find a cure for PSP. Thank you for the care and concern that you have afforded our beloved Carol. We pray a breakthrough will come soon and urge all possible support from all sources — both public and private — to magically appear for the necessary research for that to occur. 

Charles George Schouw, affectionately known as Chuck, passed away peacefully at the age of 84 on November 22, 2024, in Arizona, United States. He was surrounded by his loved ones as he succumbed to progressive supranuclear palsy, a rare and challenging form of atypical Parkinson’s disease.

Born on June 23, 1940, in Flushing, New York, Chuck was the cherished son of Charles and Lillian (Dobbs) Schouw. He spent his formative years in Northport, New York, where he graduated from Northport High School in 1958. Chuck's academic journey led him to the prestigious Pratt Institute in Brooklyn, New York, where he pursued a Bachelor of Science degree in electrical engineering. During his time at Pratt, he was an active member of the ROTC program, which laid the foundation for his future military service.

Upon graduating in June 1962, Chuck embarked on a distinguished career in the United States Marine Corps, entering as a 2nd Lieutenant Officer. His dedication and leadership skills earned him a promotion to 1st Lieutenant, Intelligence Officer, in 1964. After leaving active duty in 1965, Chuck continued to serve in the USMC reserves for an additional three years, demonstrating his unwavering commitment to his country.

In 1963, Chuck married his first wife, Gloria Benjamin “Walker.” Together, they settled in Southern California, where they welcomed two beautiful children into the world: Maren Frances in 1965 and Jason Wesley in 1968. Although Chuck and Gloria eventually parted ways, they remained devoted parents to their children.

Chuck found love again and married Susan “Cannon” in October 1977. Their marriage, which spanned over 47 years, was a testament to their enduring love and partnership. Together, they built a life filled with adventure, family and cherished memories.

Chuck's professional journey in the business world began in 1965 when he secured his first position as an electrical engineer with EECO. Over the next 37 years, he made significant contributions to the electronics and high technology industries, working with renowned companies such as Signetics; Liberty Electronics; Marshall Industries; Harris Semiconductor; Intersil; GE; Custom Technology Sales; Sony Semiconductor; and M-Systems. His career was marked by a steady ascent up the professional ladder, culminating in his retirement on December 31, 2002.

Following his retirement, Chuck and Susan relocated to Southern Oregon to be closer to Susan's parents and embrace a more leisurely pace of life. During these years, Chuck dedicated himself to renovating their beautiful home and played an active role in his grandson Kristopher's high school experience. As President of the Booster Club, Chuck was a mentor and source of inspiration to many students.

Chuck and Susan's retirement years were filled with joy and exploration. They traveled extensively across the western United States, indulging in backcountry speeder trips with friends, and ventured abroad to experience new cultures. Their home was a hub of activity, hosting game nights and potlucks for large groups of friends. Chuck also pursued his passion for garden railroads, building his third one during this time. Together, they fulfilled Susan's dream of RVing, creating countless memories on the open road.

In 2014, Chuck faced a new challenge when he was diagnosed with prostate cancer and Parkinson’s disease. This marked a turning point in their lives, prompting a move to Arizona, where they enjoyed snowbirding during the colder months in Oregon. Arizona provided Chuck with the best care available, ensuring his comfort in his final years.

Chuck was a deeply beloved son, brother, father, uncle, cousin and friend. His passing, though expected due to the nature of PSP, leaves a profound void in the hearts of those who knew him. The family is immensely grateful for the compassionate care provided by hospice in his final weeks, ensuring his comfort and dignity.

In accordance with Chuck's wishes, there will be no formal services or celebrations of life. Instead, he desired for his family to gather at a future date of their choosing to remember him.

In honor of Chuck's life and legacy, donations can be made in his memory to CurePSP, located at 325 Hudson Street, 4th Floor, New York, NY 10013, to support ongoing research into a cure for the disease, or to Desert Valley Hospice & Palliative Care, located at 20045 N 19th Avenue, Suite 162, Phoenix, AZ 85027.

Cipriano Llanes was born on July 1, 1949, in Raymondville, Texas. He was lovingly known as “Cip” by his family and friends. Cipriano was kind, generous, respectful, honest, and very loyal. He was well known for his big heart, supporting and encouraging those around him. He displayed many humble qualities which made it easy to admire and respect him.

He was the oldest of six children who was respected and looked upon as the father-figure by his siblings. He was a loving father of four and grandfather of two as well as a caring father-figure of two and grandfather-figure of seven.  The grandchildren brought joy to his life.  They were happy to sit and listen to music with him and enjoy his company.

Cipriano and Lourdes enjoyed 21 happy years together. They were blessed to be able to enjoy many fun and memorable trips to many beautiful places. Traveling was one of his favorite things to do. One of his favorite pass times was relaxing while listening to many genres of music whether it was in English or Spanish.

Cipriano was knowledgeable, dedicated and hard working. He was service-oriented whether it was helping the family, friends or through his job. He served his community in the County of Los Angeles in the area of social services for over 35 years. He was well respected by his colleagues.

Cipriano was a man of faith who loved life and his family. He was a social soul and was the happiest when he was surrounded by family and friends BBQing, enjoying their company, conversation, laughter, and a good glass of whiskey.

Elmo Minimirito dela Cruz was born on October 18th, 1943 in Bauang, La Union, Philippines. Out of 9 children, he was the 6th child of Jose and Emilia dela Cruz. In 1966, he left the Philippines to join the United States Navy. He worked as a steward and was last stationed on the USS Massey, which took him many places around the world. After his years of service, he worked as a supervisor for the department of Veterans Affairs in Newark, NJ,  for the remainder of his career.

Elmo met Maria Concepcion Barroga – whom most of you know as Connie, in 1969 thru mutual friends. They were married on October 24, 1970. They have three daughters: Cynthia Lucia (Cyndy), Emily Concepcion ( Emee), and Clarissa Marie (aka Sisa). Clarissa and her husband Barry Rhodes have one son, Joseph Laine (Joey). Elmo lit up every time his grandson came to visit him.

Elmo was first diagnosed with Parkinson’s Disease (PD), which we accepted. Most of his symptoms mirrored those of PD and the medications seemed to work. Years later, a specialist properly diagnosed him with the form of atypical Parkinsonism known as PSP. Throughout his battle, Elmo showed great strength. He stayed as independent as he could, for as long as his body would allow. He was stubborn that way. Although his mobility and speech were deteriorating, he could still manage the smiles, the jokes, and entertain anyone who came into the house.

Elmo was a fun person with great love and compassion for his family, friends, colleagues, and peers. He had a remarkable way of making everyone from all walks of life feel welcome in his presence. His kids have many friends who refer to Elmo as “Dad” and he loved all of them as much as they loved him.

A quote from the song, ”For Good,” says it all: It well may be that we will never meet again in this lifetime. So let me say before we part, so much of me is made of what I learned from you. You’ll be with me…like a handprint on my heart.

To all of our friends and family, you have been amazing throughout the years. We cannot express our gratitude enough. From Connie, Cyndy, Emee, and Sisa – we thank you for your support in unlocking the cure to PSP.

Iluminada (Lumen) Diato de Castro peacefully passed away at home surrounded by loved ones on June 14, 2023, after a 5-year battle with Progressive Supranuclear Palsy (PSP).  Lumen was a devoted wife to her husband Renato of 53 years, mother to her three children, Christine, Kathy, and Karen, and Lola to her six beautiful grandchildren, Claudine, Mateo, Devon, Sydney, Kendrick and Kamryn.

Lumen was born on February 14th, 1948 in Imus, Cavite, Philippines. Lumen was the youngest of 5 children of Gaudencio and Magdalena Diato. In 1975, she and her husband Nato left the Philippines for the United States in the hopes of providing a better life for their family. It was with Lumen’s degree in Pharmacy from the University of Santo Tomas that allowed her family to immigrate to the US.  She bravely made the transcontinental trip all by herself with very little money, as the rest of the family joined her two months later. Lumen made countless sacrifices, worked incredibly hard and not only figured out how to make ends meet, she proudly raised three smart, successful and independent daughters.

Lumen was initially diagnosed with Parkinson’s Disease in 2018. Some of her symptoms mirrored those of PD but the medications didn’t seem to work and her family remained in search for another answer. A year later, a specialist properly diagnosed her with a form of atypical Parkinsonism known as Progressive Supranuclear Palsy, or PSP, a very rare neurodegenerative disease that currently has no treatment or cure.  Throughout her 5-year battle, Lumen showed great strength and determination. She stayed as independent as she could, for as long as her body would allow. She would walk 10,000 steps each day and do daily exercises with the assistance of her family and caregivers. Although her mobility and speech became more limited over time, she could still manage smiles and laughs, and her memory remained sharp.

Lumen was vibrant and full of energy with great love and compassion for her family, friends and colleagues.  Her name, Iluminada, means “light” and she did so much to illuminate the lives of all those around her.

“Eternal rest grant unto her, O lord, and let perpetual light shine upon her. May she rest In peace. Love always, in the name of Jesus. Amen”

To all of our friends and family, you have been amazing throughout the years. We cannot express our gratitude enough. From Nato, Christine, Kathy, and Karen – we thank you for your support in unlocking the cure to PSP.

Judith “Judy” Barrett was born December 15, 1946 in Cleveland Ohio to Clyde and Florence Andrews. She was the bigger sister to Patricia and Jeffrey.  Judy was a passionate teacher and lifelong student who believed in the power of education. Judy worked hard to earn her Bachelor’s (Eastern Illinois) and Master’s (National Louis University) degrees, but she was also a loyal, dedicated and present mother for Andrew, Benjamin and Katherine. She would often study late at night after her children were asleep, but never complained, was incredibly hardworking, and always put her family first. Judy went on to become a preschool, Sunday school, and elementary school teacher. She taught in District 54 in Schaumburg, Illinois, for over 18 years, before retiring in 2007.

Besides teaching, Judy’s favorite profession was being Grams. She was blessed with five beautiful granddaughters and one handsome grandson. Spending time with her grandchildren was one of her greatest joys in this life. She also loved going for walks with her dog, traveling the world with her husband, Charlie, and taking in the beauty of the changing leaves in the fall. 

More than 10 years ago, Judy’s journey with PSP began when she started having difficulties turning her head. She would occasionally start to fall backwards and slur her speech. At first, she thought it was just old age and laughed it off. But then, her beautiful handwriting started to change. It took more than six years and countless tests before a doctor was able to accurately diagnose Judy’s symptoms. In 2012, Dr. Kang at the University of Chicago informed her she had PSP. Shortly after the diagnosis, Charlie, her beloved husband of 44 years, unexpectedly passed away. Judy would continue treatment and care under Dr. Xie at the University of Chicago until the later stages.

In the face of incredible grief and adversity, Judy leaned into her natural curiosity, which helped her quickly learn everything she could about PSP. A student once again, she soaked up all she could from the numerous doctors she would meet with day-to-day. She did her homework every day and was regimented about her exercise routine until her body would no longer allow it. Against all odds and with unwavering grit, she slowed the progressive disease down. Judy was tenacious in her efforts to fight for her life. She did it for her children, she did it for her grandchildren, and she believed in the best when faced with the worst. 

On November 19th, 2019, after more than a decade of fighting, the brave warrior peacefully surrendered into the arms of her savior, surrounded by her loving family.

We were blessed to have such an amazing family matriarch. In addition to being the most amazing Mom and the most loving Grams, she was the most dedicated sister and the most loyal friend. Judy’s last wish was to donate her brain to the research efforts ongoing via CurePSP in hopes that one day, a cure will be found. Your donation will help fund clinical trials for a cure and assist those suffering with this horrible disease in getting proper care. On behalf of our family, we thank you for your support.

When Lance Chontos saw his wife Nancy across a crowded room at a Y.E.S. (Young Executive Singles) event he knew he needed to talk to her. They realized that night how much they had in common, as Lance “checked off his important boxes” on his list of values.

Their conversation that evening turned out to be symbolic of Lance’s character: he was a kind, caring and analytical person who valued his relationships, morals and values above all else. A chemical/mechanical engineer at Southern California Edison (SCE) for decades, he loved being on his computer. When Nancy first introduced him to Facebook he was apprehensive due to the “fakeness” of it, but when he realized that it allowed him to connect with old friends he quickly became obsessed.

He lived with Nancy in Orange County for over twenty years before retiring from SCE to Nevada in 2015. Everyone who worked with Lance loved his punctuality, detailed reports, excellent customer service and great sense of humor.

Together, Nancy & Lance enjoyed exercising, taking drives, participating in Karaoke, drinking wine, getting together with friends (Lance always preferred small groups of people so that they could have real conversations), appreciating nature and loving their many pets as family since they never had children.

They renewed their vows on February 3, 2016 on their 25th wedding anniversary. Just as they had done for their wedding, they wrote personal vows to each other. They had a great love and a very romantic relationship.

Born in Duquesne, Pennsylvania (a suburb of Pittsburgh), he was the second of five children and the only boy. He obtained his BS in Chemical Engineering from Pitt, his PE (Professional Engineers) License in Mechanical Engineering and later his MBA in Finance from Carnegie Mellon University in Pittsburgh. While working as a Stock Broker at Merill Lynch selling on a commission basis, his managers grew frustrated with him because he didn’t want to sell “the product of the day” if it wasn’t right for his customers, many of whom were seniors, proving himself to be too thoughtful for the commission sales structure of finance and pivoting back to engineering. Growing up in industrial Pittsburgh, the sunny weather of Southern California attracted him to the west coast, where he settled for decades. Alongside Nancy they raised cockatiels, then had cats and dogs, who are missing him dearly.

He led with kindness, self-determination and lived a very healthy lifestyle. In 2021 he was diagnosed with PSP while also fighting stage four metastatic prostate and bladder cancer. He fortunately never experienced pain and was the “best patient” that Nancy could have asked for, handling every new challenge with grace and self-determination to lessen the burden on her. He never complained about using a walker or wheelchair, and as a chemical engineer seriously offered to any doctor who would listen that he might be able to find a cure for PSP. Lance passed away on February 4, 2023 in the arms of Nancy, a day after their 32nd wedding anniversary. Nancy will be preserving his gracious legacy with this fund and is grateful for all donations made to CurePSP in Lance’s name to support families with similar experiences.