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. 

Chris Multhauf passed away peacefully on January 15, surrounded by family. He lived with dignity, generosity and a deep commitment to those he loved. A devoted husband and father, respected leader, teacher and friend, Chris approached every chapter of his life with integrity, humor and purpose. He died from complications of Progressive Supranuclear Palsy (PSP), a rare neurodegenerative disease, which he lived with courage and grace.

At the heart of Chris’s life was his family. He shared a loving partnership with his wife, Lynn Osmond, and was a proud and devoted father to his sons, Keath and Cyrus, whose lives brought him great joy.

Chris grew up in El Paso, Texas, earned his bachelor’s degree from the University of Texas and received his MBA from Cornell University. He built a successful career as a healthcare executive, co-founding First Commonwealth, which grew into a publicly traded company. He later served as Dean of the Business School at National Louis University and the Lake Forest Graduate School of Management, where he was known for inspiring students and bringing real-world experience to the classroom.

Chris was deeply engaged in Chicago’s civic and cultural life. He served on the Board of the Chicago Architecture Center, where he met his wife, Lynn, and remained involved long after stepping down. As a longtime docent and the creator of the popular Devil in the White City tour, he shared his love of architecture, history and storytelling with thousands of visitors.

After an initial Parkinson’s diagnosis in 2012—later re-diagnosed as PSP in 2023—Chris and Lynn chose to focus on living fully. Together they traveled widely, explored 49 states and embraced life with curiosity and gratitude.

Chris will be remembered for his kindness, humility, curiosity and love.

He is survived by his wife, Lynn Osmond; his sons, Keath and Cyrus, (mother Susan Forney); his father, Bill Multhauf Sr. (Delyth); his brother, Bill Multhauf Jr. (Gail); his sisters, Karen Ivey (Patrick) and Lisa Miertschin; and extended family. He was predeceased by his son Graham, his mother Tish and his brother Eric.

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.

For fifteen years, Cindy MacDonald was the heartbeat of the PSP community in Southwest Florida and beyond. This tribute fund honors her legacy by providing travel assistance to help families attend the Annual Southwest Florida PSP Support Group Awareness and Memorial Walk in Marco Island, Florida each spring — ensuring that financial barriers don't prevent families from experiencing the community and support that Cindy worked so hard to build.

After her mother Dorothy was diagnosed with PSP, Cindy discovered the Southwest Florida PSP Awareness and Memorial Walk in 2005 and was amazed to find others who even knew what PSP was. That experience transformed her life's mission. She eventually took over organizing the event and founded the Southwest Florida PSP Support Group, building what became the longest-running PSP awareness walk in the nation.

Under Cindy's tireless leadership, the Walk grew from 40 attendees to over 260 participants traveling from 23 states, raising more than $1 million for PSP research and support. But for Cindy, the true measure of success was never about the numbers or the money—it was always about the heart. She resisted automation in favor of personally calling support group members every Friday and Saturday. She insisted on homemade cookies instead of store-bought ones. She made sure every family felt welcomed, valued and understood.

"They just want to be around people who get it," Cindy once explained, and she created exactly that space. A self-described hugger, she embraced everyone who reached out with unconditional love and compassion. The memorial signs that grew to over 70 by her final walk stood as testament to her belief that every family's struggle mattered and every loved one would be remembered.

At her final walk in March 2025, CurePSP CEO Kristophe Diaz thanked her for a phenomenal day. Cindy's response captured everything she stood for: "Next year, we have to make sure we don't lose the heart. The heart is the most important. It's not about the money. It's about the heart."

Just one week later, Cindy received the cancer diagnosis that would take her life on December 2, 2025. This tribute fund honors a woman who proved that unconditional love could lift people up and that building community gives families facing rare diseases a reason to hope.

Every donation to Cindy's tribute fund will directly support the newly established Cindy MacDonald Travel Assistance Fund, helping families attend the walk and access the educational and support opportunities available at CurePSP's largest volunteer-led event, supporting CurePSP's broader mission to raise awareness, build community, improve care and find a cure for PSP, CBD and MSA. Because Cindy built it, they will keep coming — and her legacy of heart will guide the way forward.

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.

Gary Smith spent 37 years as a music teacher in school districts in Ohio. His love of music was shared with thousands of students over the years. His biggest love, however, was his family. He was married to Jan for almost 40 years before she passed away from breast cancer in 2010. His love and care for her during her illness was an inspiration to all who knew him. Gary was the biggest supporter of his children and grandchildren who will work to honor his life and support CurePSP to find a cure for this disease that he so bravely fought.