Death ends a life, not a relationship.
-Morrie Schwartz, Tuesdays with Morrie
Below are the names of friends of the PPA who have passed on. We are grateful to have known these inspiring individuals.
Date of Death: July 21, 2018 Age 53
It is with great sadness that we announce the passing of Mr. Jodie Butler. Jodie suffered with Andersen-Tawil Syndrome. The affected calcium gene is the CACNA 1S and the alteration (mutation) was given the name Cav.1.1 M222K.
Despite his hardships, he managed to be an active member of the periodic paralysis community, sharing his experiences with PPA members both on-line and at two of our PPA Conferences. Jodie contributed meaningful items to our auctions, including American flags flown at various historic places and times, making great memories for all who heard him speak.
Jodie helped raise over $1,000,000 to send 904 WWII Veterans to Washington on Honor Flights to see the memorial that represented their sacrifices and dedication to defending the American way of life. He founded a program that sent calling cards, totaling millions of minutes, to our deployed military in Iraq and Afghanistan. He started Meals of Honor to serve meals to our homeless veterans. Each program recycled old cell phones and ink cartridges using the funds to pay for services. To date Meals of Honor has fed over 13,000 meals to our Hungry Heroes.
All who knew him recognized his kind and giving soul, offering to help the PPA even at times when he probably needed more help himself. He will be missed, but he will not be forgotten.
October 4, 1943 – December 23, 2017
Kay Cochran was the inspiration for the inception of the Periodic Paralysis Association. Kay suffered from Andersen-Tawil Syndrome, but she didn’t have a concrete diagnosis for most of her life. Patrick Cochran, her devoted husband of many years, sought to change all that. He connected with a handful of other periodic paralysis patients through the nascent internet and immediately recognized massive unmet needs for the periodic paralysis community. His vision culminated in the formation of the Periodic Paralysis Association, through which patients could share stories and meet at live conferences, medical advisors could be available to answer questions, and disease information and resources could be readily accessible. Today, the PPA boasts over 1000 members and has given direction and changed the lives of countless medically lost soles who were otherwise abandoned by the medical profession.
In order to understand why and how all this was done, one must understand who Kay was. She was a loving, caring, and kind woman who sought to make everyone feel welcomed and comfortable. At the PPA meetings, she set the standard for how the meeting was run “behind the scenes,” dealing with registration, welcome packets, and the general running of the meeting. To this day, the PPA follows the structure she created. The mission of the PPA and the manner in which it has been carried out rests largely on the shoulders of what Kay Cochran espoused: welcoming, kindness, helpfulness, and perseverance.
It is hard to imagine a world without Kay Cochran. But, her soul lives on in the many she has touched and in the association she inspired.
June 22, 1948 – May 8, 2018
He pioneered genetic testing, offering it for free to many of us, and discovering mutations in many of us thereby validating our diagnosis and allowing us to optimize our therapy. He coached many of us in our treatments. He pioneered diagnostic methods, like sodium MRI and new treatments, like eplerenone. He published prolifically, literally writing the textbook chapters on periodic paralysis and related disorders. He mentored generations of researchers and clinicians. Most important, he was loving and kind, a fervent supporter of the Periodic Paralysis Association and of the patients suffering with these diseases. He will never be replaced, never be forgotten, and always be missed.
The most meaningful award Frank received in his lifetime was the Art of Listening Award. He valued that night more than all his professional awards because it was from his patients whom he loved.
Clyde M. Hoskins
December 27, 1924 – April 18, 2013
Clyde M. Hoskins (left); Mr. Hoskins with his daughter, Donna Jean, at a family reunion (right)
Clyde M. Hoskins, 88, of Union City, passed away Thursday, April 18, 2013 at the Heartland of Greenville.
He was born December 27, 1924, in Crab Orchard, Garrard County (Paint Lick), Kentucky, son of the late William Edward and Daisy Belle (Hulett) Hoskins. In addition to his parents, he is preceded in death by sisters; Rosa Bowman, Ethel Shaw-Lumpkin, Lynn Cooley and Ora Snyder-Huff; brother, William Hoskins; one great granddaughter, Daphani Nicole; and first wife, Lucille Webb-Hoskins-Wehrkamp.
He is survived by his wife Eileen (Hartzell) Hoskins whom he married July 3, 1966; two sons, Ronald Hoskins and Rick (Debi) Hoskins both of Greenville, OH, and daughter Donna Jean (Greg) Stickler of Blanchester, OH; 12 grandchildren, 16 great-grandchildren, and numerous nieces and nephews.
His daughter, Donna Jean, describes her father as a kind man, always friendly and happy for the most part, who struggled for most of his life with severe attacks of Hypokalemic Periodic Paralysis. His first attack of paralysis occurred at age fourteen, and he had to miss a lot of school, making his teenage years particularly difficult for him. He referred to his attacks as “spells” and would become paralyzed for up to five days at a time; it was not until many years later, when his daughter was symptomatic, that familial periodic paralysis was finally diagnosed.
Services were held at 1 PM Thursday, April 25, 2013 at the Oliver Floyd Funeral Home in Greenville. Burial followed in Greenville Township Memorial Gardens, Greenville, OH.
Family received friends at the funeral home Thursday from 12 PM until the time of service. The family requests that memorial contributions be made to the Hypokalemic Periodic Paralysis Association (please click here to contribute) or to State of the Heart Hospice.
Alexander (Sasha) Batyutenko
December 29, 1980 – December 2, 2012
Photo of Sasha with his wife, Nadia.
Alexander (Sasha) Batyutenko was born December 29, 1980. He was married to his wife Nadia in 2004, and they made their home in Lebedin in the Ukraine. They had 2 young children, a son named Makcnm and a daughter named Ahactacna, both of whom also suffer from periodic paralysis.
Sasha died due to respiratory failure secondary to a severe paralysis attack in a hospital setting. He was very involved in patient advocacy in the Ukraine, where he helped a number of patients overcome significant hurdles in getting blood to Ulm, Germany for genetic testing. He also was able to translate large portions of the PPA website into Russian to help these patients manage their periodic paralysis. He will be sorely missed.
You can learn more about Sasha here
Joshua Wagers of Charleston, SC. Age 41, left behind wife Christine and sweet baby girl Isabella
(4 months at the time of his passing).
Ms. Abbie Louise Tuttle
February 21, 1915 – September 2, 2012
Abbie Louise Tuttle, age 97, residing at the Bridges at Bent Creek, Mechanicsburg, PA passed away Sunday, September 2, 2012. Born February 21, 1915 in Philadelphia, PA she was one of eight children of the late John and Bessie (Irons) Grauch.
Surviving are two of her three daughters, A. Louise Grow and husband Charles Grow of Dillsburg, PA and Carol L. Davidson and husband John S. Davidson of Bear, DE. Judith Tuttle has been deceased since August 10, 1999. Abbie Lou also had four grandchildren and nine great-grandchildren.
Abbie Lou was a graduate of Hyperion School of Music, an excellent pianist and a Medical Secretary for many years. She loved music, gardening, sewing, reading, crocheting and puzzles.
Lou requested that, in lieu of flowers, donations be made to the PPA.
Carl Parker, Jr.
May 27, 1966 – May 3, 2009
On May 3, 2009 we were all shocked and saddened by the passing of our Board Member, Fundraising Chairman, and friend, Carl Parker, Jr.
Carl touched so many lives and leaves behind many adoring family members and friends. As a long time friend and colleague of Carl’s, please indulge me in expressing my memory of him. Carl and I met through an association that unifies that portion of his life to which he devoted considerable energies: periodic paralysis. I have known Carl for approximately 12 years. We met at the first conference of the PPA and became friends instantly. I am not sure what the world will do without Carl Parker. He had so many valuable qualities: most strikingly a devotion to his wife and children. In working with him in the PPA, I understood Carl to be a man of great depth, insight, and understanding underneath a veil of humility. He was down to earth and told it like it is. He was selfless and caring. He had a way of connecting with people that was second to none and always looked out for his fellow man. In many ways, having had the disease himself and being so dynamic and active in the Association and conferences, Carl veritably defined the PPA and what it stood for. He was the people guy – he would regularly speak with whomever had a problem or concern and always help them. But not just help them. He made them feel that they had his full support…because they did.
Carl and I had many conversations about what our purpose was, where we should take the organization, and how we should get there. I always appreciated Carl’s common sense, persistence, and motivating phone calls.
I guess you don’t realize just how important a person is to you until you wake up and they are gone. More than being a regional representative, Fundraising Chairman, and Board member, Carl was a friend. I would say what gave the most meaning to my times at the PPA Conferences were the times spent with Carl and Rhonda, laughing while touring casinos or shooting golf.
If you are listening Carl, please know that the PPA will be here for your family. We will never forget the contributions you made, and we will make you proud of the legacy you left us. You and I promised that we would make this work. Carl, we will not let you down. Good bye, my friend.
Jacob Levitt, MD
President, Periodic Paralysis Association
Ms. Judy Tuttle
The Judy Tuttle Memorial Research Library was established in honor of this beloved friend and caregiver.
“Teach me to see and understand
The trials which others bear;
Teach me to lend a helping hand
Such trials and troubles share. . .”
-Bessie Irons Grauch (Judy’s Grandmother)
She was very dedicated to her mother’s care throughout her life. Her mother, Abby Lou, was affected by hypokalaemic periodic paralysis all her life. When she was no longer able to work, Judy chose to stay home and support her mother rather than pursue her own career.
They became best of friends and traveled around to the famous botanical gardens throughout the years until Judy died from cancer. Both Judy and her mother were great supporters of the Periodic Paralysis Association, from before its formal organization.
It is difficult to express properly, this unique bond between mother and daughter, and the life of commitment to each other through all those years.