Jeff Toughill 1940-2026
Remembering Jeff Toughill
Below, we have compiled stories and tributes to Jeff that the community, staff and physicians have submitted since Jeff’s passing, to remember the impact of his work and his legacy on the histio community.
My deepest condolences to Jeff’s family. His vision and dedication transformed the LCH community forever. Through his compassion and relentless commitment, he gave hope and connection to thousands of families worldwide. Jeff didn’t just build an organization-he created a lifeline and a legacy that will continue to inspire us all. Thank you, Jeff, for changing the world for so many.
Antonio Perez-Martinez
Spain National Group in LCH and HLH
When we found out my dad had Erdheim Chester Disease, histio.org was my go to resource. I vividly remember being at our county fair and talking with staff from the Histiosytosis Association as I had just received the diagnosis. Unfortunatly, my dad died 20 days after receiving the diagnosis but my relationship with the community has continued. I pray for those who are navigating the many diseases of histiosytosis. Thank you Jeff for creating a resource for those who feel so lost and uncertain. RIP
Mindy
“My dad had ECD”
Jeff’s efforts created the possibility for so much progress and so much comfort and better care for this community. I was able to get started studying histiocytosis because I received a grant from the HAA (the HA now). Truly his efforts helped so many others to do good/ be better – like an amplifier! Truly an enormous impact. Thank you Jeff for your vision and your years of dedication!
Mike Jordan
Physician at Cincinnati Children’s Hospital, former Histiocyte Society President
I first met Jeff around 40 years ago when our daughter’s pediatric hematologist recommended we reach out to the association. It was at the beginning of the group and not too many members. We talked late into the night about his and our daughters, and what to expect regarding treatment, etc. I assisted Jeff one year by attending a meeting, and video recording it, and making copies available to other members. The research was way in its infancy, and protocol was learned by doctors sharing results from all over the world. Jeff’s enthusiasm, and positive outlook was amazing. I admired his commitment and dedication to the association for all those years. Our condolences to Jeff’s family and the association.
Dave
Histio Parent
Jeff was always there for me and my family, made time for us, and was generous and genuine in his interactions. He was compassionate and connected with our son. Thankful that he founded the Association, and ever grateful that he gave it his heart and soul as to share and heal others. Love you, Jeff.
Ryan Brown
Histio Parent/Histio Hike Host
In 1989 my son, at the age of 6, was diagnosed with histiocytosis X. He had a lesion the size of a quarter on his skull and some lymph nodes removed. He eventually had issues with his gums also. At the time I could not find anything about the disease. It was very frustrating. His doctor told me about the hIstiocytosis association. I called and talked to Jeff and I felt so much better knowing there was someone out there with info. It didn’t take long for my son to go into “remission” but I continued to follow what was going on with the disease. Things have come so far. I didn’t have a lot of contact with Jeff but I never forgot his name. It saddens me to the core that Jeff has passed. He was a great man. My sympathies to his family. I’m sure you are all very proud of him. May he rest in Peace.
Patricia
Histio Parent
Even though i have just joined the community and even though my son’s case not treated nor well diagnosed yet but noone can imagine how grateful am I for such a great achievements of the histiocytosis community starting from funding up to the moment!
El Seddig
LCH Patient
I was diagnosed in 2009 in Colombia, my country of birth. I was lost without proper information until I ran into the histio website. I contacted Jeff who was extremely kind and helpful. He even went out of the way to send me printed information all the way to Bogota. To this day, I still keep those papers. They helped me educate my doctors and also helped me discover the reason I had been drinking so much water. I had Diabetes Insipidus and no doctor was able to diagnose that in 8 years! But Jeff helped me realize that. Learning about his passing made me tear up. What a wonderful legacy he has left for our small community. I even created a Facebook group in Spanish on Facebook in 2009 so patients could communicate with each other and have information in Spanish. The group now has over 1,000 members. Thank you Jeff and family for the tremendous dedication poured onto all of us.
Susana
Histio Patient
24 years ago I reached out to Jeff via email , desperate to save my son. He didn’t return my email. He called me because he said felt moved to. Jeff guided me through research to find a doctor who had treated this before and when we were at the point of mortgage our house and flying him to France to see the only doctor we could find, Jeff located one in our home state of Texas. It was a long 18 months of hospital stays, surgery etc but my son went into remission and now has a wife and son of his own. Jeff holds a special place in my heart and his kindness has encouraged me to help others as well. Jeff is resting with our Lord now and I am SO grateful our paths crossed
Becky
Histio Patient
I am so grateful to Jeff for the work he has done to bring Histio to light. It was a great comfort (36 years ago) when our child was first diagnosed to know that someone was working on this “orphan disease”. He has lived up to the poem in many ways. God bless, Rest in peace.
Scott
Histio Parent
When my son was diagnosed, I was directed to the Association’s phone number and web page where I came into contact with Jeff. He called me and was very helpful and informative. I met him a few years later in Madison, WI when he came here for a Kids with Courage cancer symposium. I have him to thank for starting this organization which directed us to Dr McClain for treatment protocols. At the time, we had opinions from multiple doctors and hospitals that all said not to treat the disease. My son ended up getting treated with chemo and steroids and then 1.5 years later treated again with a stronger chemo when the disease recurred. The web site gave me an online chat where I could correspond with others which was a wealth of information, it provided a red book of all the recent research papers -which I read completely and multiple times, and it provided connections to who were the best doctors to treat the disease. My son is now 26 years old and is in Physician Assistant school and has no issues (other than needing desmopressin). I am incredibly thankful for Jeff and the organization he created which helped me to save my son’s life.
Margaret
LCH Parent
I would like to thank Mr Toughill and his family for creating this wonderful community for those of us and our Families and Friends who had a histiocytosis disease. It was amazing to go to one spot for answers to medical questions and to connect with others who are going through the same thing. It definitely made me more comfortable dealing with this rare disease. Jeff made a huge difference in my life and I’m sure many others.
Claudia
LCH Patient
I’ll never forget speaking to him in the early days of my son’s diagnosis. I was panicked, but he had such a calming voice, backed with knowledge and eagerness to help. Jeffrey Toughill gave me the knowledge of gold standards to chase after when my gut was telling me my son’s oncologist, who wanted to wait and see, was wrong – he guided me in the right direction ❤ I’ll always remember the guidance he provided me with in our darkest hour; he was truely an angel among us. ‘For those who live in the eyes of the lord will never see each other for the last time.’
Amanda Blomberg
Histio Parent
Grateful for the support, information & community during those years of our daughter’s diagnosis (LCH). Appreciate the dedication & devotion to helping others. Sending love & condolences during this time of loss.
Melica
LCH Parent
It is with our deepest condolences that I write this message of love and gratitude. At almost three years old, our son, John Patrick (JP), was diagnosed with multifocal eosinophilic granuloma at the time also known as langerhans cell histiocytosis and histiocytosis x, once the doctors agreed on the diagnosis, they gave it all three names. This was in Atlanta in 1994. At the time the outlook was not good. One lesion took his entire left lower mandible and then the other one was right smack in the middle of his brain. They removed the lesion in the mandible and then they decided to consult worldwide for next steps on a chemo cocktail for the one in his brain. We decided not to go with chemo unless the lesion grew and in 6 months, it actually started to shrink. One year after that, it was gone. No chemo or any other interventions, just a kid who loved broccoli and smoked salmon and was blessed with a miracle. He is now 31 and in perfect health, no recurrences. A couple scares in high school but thankfully no recurrences. Jeff helped us tremendously as we tried to navigate being told that our perfect child had an “orphan disease” for which there was no cause and no cure. We didn’t even have a computer in our home yet so finding any information at all was incredibly difficult but Jeff was always just a phone call away and just being able to express frustration to an empathetic ear was more appreciated than he will ever know. We did some fundraising in that first year and then when JP was in 4th grade and the Lance Armstrong Livestrong bands were all the rage, JP decided he wanted to make Histiocytosis bands, so he did. He wrote a letter to Lance Armstrong, he found a manufacturer and we placed our first of many orders for bands. He then sold them at his school and many events in and around Washington DC. He even took about 50 to London where his grandparents lived and sold them over there. He sold them on the HAA website and he wrote letters to everyone he knew telling them about his history and why he made and was selling the bands. I would have to look back to see what the total amount was that he raised with those bands but it was more than we ever dreamed of. He turned his fear of more needles, more bone scans, more MRIs more trips to the oncology unit at Childrens Hospital into an inspirational project of a grateful child giving back. He got to meet Jeff and their photo along with JP’s story of the bands got in the Washington Post, that was one of his most proud moments as a child. At that point in his life, he understood that he was one of the lucky ones and that you and Jeff had committed your lives to making sure that a cure was found. He wanted to be a part of that. Thank you for the love, compassion and empathy that you have shown and continue to show to families affected by this horrible disease. Jeff will never be forgotten. He remains in our hearts forever and may he rest in eternal peace.
Kathy
LCH Parent
I had a number of very pleasant interactions with Jeff during my time as the resource coordinator for Indiana. He was always so positive and went out of his way to ask about Stuart anytime we spoke. Not the check box type of ask either he really made sure you felt like the whole organization had your back both in your role with HAA and as a family navigating the medical journey. His impact was amazing. Stuart has been no active disease since 2015 and even a decade later we stay up to date with this organization because of Jeff’s inclusion and depth of caring.
Sarah Owen
Histio Parent and former State Resource Coordinator for Indiana for the Association
When I was diagnosed about 30 years ago I felt so alone, wondering what on earth this meant for me besides what was already happening. My friend brought me a Histiocytosis Association Pamphlet from her son’s oncologist. It was the first real connection I felt like I had- the first real description of what was happening to me. Some hope and some answers that felt closer to home than what the doctor offered. I thought about how the Toughills must have felt- they had nothing; they had to build what I grasped onto. I was able to call the HAA and talk to real people about my situations and if they knew anything about what to expect. I have often thanked God for bringing Jeffrey into contact with all the people necessary to grow the Histio Community in a positive way. I am forever grateful for Jeffrey’s drive and creativity. His work was a true blessing to my life and so many more.
Heather
LCH Patient
We are deeply saddened to hear of Dr. Toughill ‘s passing. Toughill dedicated his life to the fight against Histiocytosis. We will always appreciate and remember Dr. Toughill
My Lam
International Histio Community Member
I never met Mr. Toughill personally, however when I was diagnosed in 2012 with PLCH I was scared, uninformed, most doctors in my area weren’t well educated on the disease. If it wasnt for his dedication to the support groups and research I dont know how I would’ve made it through. I want to send my deepest sympathy on your loss and my deepest gratitude for Mr Toughill for touching and helping so Many lives. God bless him and may he rest in peace.
Amanda
LCH Survivor
I am deeply saddened by the passing of Mr. Jeff Toughill. From 1989 to 2013, I attended the Histiocyte Society meetings almost every year and had many opportunities to encounter Jeff’s gentle character and his unwavering passion for the Histiocyte Society. He will be fondly remembered. May he rest in peace.
Shinsaku Imashuku
Histiocyte Society Member
We would like to express our gratitude for the time, insight, and generosity Jeffrey Toughill have shown in advising our team.
His guidance and clear indications on how to move forward in our clinical development have been extremely valuable to us, particularly as a small start-up navigating complex strategic and regulatory decisions
Eduardo Schiffrin
Histiocyte Society Member
It was in 1985 that I first contacted Jeff to discuss my infant son’s diagnosis of Histiocytosis. There was little information then on this “orphan” illness that impacted a small population of people and even smaller number of infants. My son was 6 months old when the granulomas started to appear in his mouth. It was after three surgeries that I connected with Jeff, who was a lifeline to scientific research and information. It is with heartfelt gratitude that I remember Jeff and his hard work to make the Histiocytosis Association. His memory will truly be a blessing to many.
Janet
Histio Parent
What an amazing man. Jeff was my first contact after my daughters diagnosis in 1991. He is the reason I got involved and continued. He inspired me to make a difference.
What Jeff accomplished in his lifetime is so incredible. I have no doubt Histiocytosis would not be where it is today if he hadn’t started the association from his kitchen table.
He will be sadly missed but his legacy and his commitment to the Histio families and what he has done for us will live on forever!
Aprile Duda
Volunteer for Histiocytosis Association of Canada
I never met Jeff, but I have known about him since the late 1990s, when I first started learning about histiocytosis. His legacy and impact cannot be overstated. I remember reading some of his writings in the Histiocyte Society newsletters. I am very sad to learn about his death, and I send my deepest sympathy to his family and loved ones.
Thomas McLean
Pediatric Hematologist/Oncologist and Histiocyte Society Member
Ao Jeff Toughill um gigante na medicina, um herói para muitos. Sua descoberta da associação com histiocitose mudou vidas. Sua dedicação e paixão pela ciência serão lembradas para sempre. Descanse em paz. 🌟
Abraço fraterno aos familiares.
Alessandra
Brasillian Histio Patient
We are saddened to hear of the passing of Jeff Toughill. Condolences on your loss. Jeff was a wonderful supporter of research into Histiocytic disorders. He will be sadly missed.
George Kannourakis and staff of the Fiona Elsey Cancer Research Institute, Ballarat , Australia.
I met Jeff only once online, and I was immediately struck by his charisma and his willingness to help. What he has done for the treatment of histiocytosis makes him a great person, and we are all grateful to him. “Those who dedicate their lives to healing others leave a legacy far greater than themselves.” May he rest in peace
Elisabetta Fortunati
Part of the International Histio Family Group
A very special person who truly changed the world.
Jessica
LCH Parent
I was privileged to know and work with Jeff for more than three decades, and his loss touches me deeply on a personal level.
Jeff Toughill was a man who transformed personal adversity into lasting hope for countless families around the world.
In the mid-1980s, confronted with the diagnosis of his daughter Bethany’s rare and poorly understood disease—then known as histiocytosis X—Jeff chose action over resignation. Deeply affected, yet resolute, he committed himself to ensuring that physicians and scientists would one day find answers, treatments, and ultimately a cure.
From this determination, the Histiocytosis Association was born. What began as a father’s response to his child’s illness soon became a cornerstone of international collaboration, patient advocacy, and scientific progress. Together with Dr. D’Angio, Jeff organized the inaugural meeting of the Histiocyte Society in Philadelphia—an event that marked the beginning of a new era in the understanding of histiocytic disorders.
Since that time, the Histiocytosis Association and the Histiocyte Society have worked hand in hand. Their partnership proved instrumental in advancing research, fostering global cooperation, and improving patient outcomes worldwide. Jeff’s vision, perseverance, and humanity left an indelible mark on this field.
The image shows Jeff receiving the Golden Pin from Histiocyte Society President Göran Elinder at the Annual Meeting in Kyoto in 1998, an award that is a fitting symbol of the gratitude and respect he earned through decades of selfless dedication.
Jeff Toughill will be remembered not only for what he built, but for why he built it: out of love, compassion, and an unwavering belief that no family should face such a journey alone. His legacy lives on in the lives touched, the science advanced, and the hope he helped create.
Milen Minkov,
Past President of the Histiocyte Society
Our research and clinical community are deeply indebted to Jeff’s work. My laboratory science has personally benefitted from funding to study HLH genetics via grant support from the Histiocytosis Association. Clinician-scientists, patients, and their families are grateful for Jeff and his work.
Randy Cron,
HLH Specialist at University of Alabama at Birmingham
We are forever grateful for Jeffs dedication to our histio community. We reached out to Jeff over 26 years ago when our son Joseph was diagnosed and we felt lost and alone. We will never forget Jeff’s kindess, compassion, and caring demeanor that helped guide us through some of the toughest and scariest days of our lives. We feel truly blessed to have known Jeff through the years and to have met him in person. He was a kind and gentle soul that made you feel as if you had known each other forever. He was an amazing guide through unchartered waters and we will be forever grateful for his commitment to the association and to all of us. Sending you all much love and many prayers.
Torry, Angie & Joseph
Histio Family
I am deeply saddened to learn of Jeff’s death. He was a kind, caring, and thoughtful friend to me and everyone affected by the Histiocytic Diseases. The incredible impact of Jeff’s contribution to the entire community cannot be understated. The HAA helped countless patients and families with advocacy, education, and loving support that was so personal. As a physician it was important to know the HAA was there to help my patients. The Histiocyte Society could not have flourished as it has without the financial support and collaboration with the HAA. Jeff and his team were instrumental in supporting our annual meetings, clinical trials, and awarding research grants which were critical to supporting the careers of junior investigators, including me. One of my favorite memories of Jeff was the amazing support he gave to the cross country fixed gear bike ride in 2006. He helped guide the caravan of vehicles supporting yours truly and up to 20 other riders from Davis California to Boston riding fixed gear bicycles in what was truly an epic journey
Kenneth McClain MD PhD
Pediatric Oncologist, Texas Children’s Hospital. Former Association Board Member
When our infant daughter was diagnosed, we were horrified, frightened, and felt helpless. Our treatment center put us in touch with the HA and we learned Jeffrey’s daughter had almost the exact same presentation (multisystem) as an infant and had since recovered, gotten married, and become a mother. Her story gave us much hope and promise. The Toughills’ dedication to the Histiocytosis cause and their creation of the Histiocytosis Association gave us and so many others a place go for support. We are ever thankful for Jeffrey and the legacy he created, and he will be missed.
Rebecca and Larry
Histio Parents
Just very thankful for what he helped set up and build, as it has continued to improve so many lives!
G Kotecha
Histio Family
We are saddened by the news of Jeff’s passing and want to share his impact on our family. In October of 2002, we were just getting used to being parents of Anna, our firstborn (and our parents enjoying being grandparents for the first time), and then a cold, turned into a fever, that turned into an HLH diagnosis.
In desperate search of information about HLH, my dad, Anna’s maternal grandfather, Morfar Bjorn, reached out to the Histiocytosis Association. He spoke with Jeff and asked for two things: information and one success story of a child with HLH. Jeff not only provided the most current information available at the time about HLH, and a connection to a family with a successful outcome, but one of hope and support. Anna died from complications of her bone marrow transplant on March 4, 2003, but that did not end Jeff’s support and encouragement.
We held the first golf tournament in Anna’s memory, in August of 2003, to honor what would have been her first birthday and to support the Histiocytosis Association. Jeff has attended our tournament on numerous occasions, sharing with our attendants the impact the Histiocytosis Association has on families and children in the United States and the world. We just held the 22nd Annual Anna Memorial Golf Tournament this past August. We chose to support the Histiocytosis Association back in 2003, and have continued to do so to date, due to the legacy Jeff created. He’s not only created an organization of integrity, but a network of families, to provide immediate information and encouragement to patients.
We remember Jeff with great admiration and with much love to his family.
Olsson and VanSickle families
Histio Parents/Grandparents
Jeff impacted me some time after I was diagnosed with idiopathic diabetes insipidus. There was almost no information available regarding this condition, and information was certainly sparse among the medical community. Jeff and his organization increased awareness and created a community which was very beneficial to me during a very confusing and disruptive time in my life. Thank you Jeff for your positive and influential impact on me and the world.
Marty
Histio Community Member
Like many others in the community, I received a phone call from Jeff when I felt very overwhelmed by my diagnosis and had found the HA website while seeking information. His compassion and reassuring support were unforgettable. His caution that I should go to any provider that I saw armed with information that he would send me about care of adult LCH made me conscious of how rare the disease is and a preview of the difficulties that I would have in finding providers with any knowledge and experience with these diseases. The entire community feels a great debt of gratitude for the support that Jeff has provided and the impact that his efforts have made on our lives.
Suzanne
LCH Patient and Histio Ambassador
Once in a while in this lifetime, we are fortunate enough to cross paths with a genuinely extraordinary human being. Jeff Toughill was just that person. My beloved father died from hemophagocytic syndrome on January 16, 2006. The last year of his life was nothing short of a circus of medical horror. After his passing, I found your organization and made a donation. To my surprise, I got a call from Mr. Toughill. He expressed his sympathies and asked how I was doing. I usually received a call from him at least once a year. One day, he invited me to lunch in Garden City, New York. I spent a wonderful afternoon with him. Thank you God for Jeffrey and for all the lives he touched. I want to express my deepest sympathies to his family. You are all in my thoughts and prayers.
Susan Wenner
Donor
Jeff and I and Joe Ingrassia and many others worked many years together to raise money for the association. This will be the 37th year in May. THAT’S THE SUCCESS Jeff gladly brought to the table. Godspeed!
Robert List
Former Board Member
I am so sorry to hear this, what a huge loss. He was such a help and comfort to me when I felt so alone with nowhere to turn for help understanding my diagnosis and options. What a genuinly generous, loving, kind person. Rest In Peace Mr. Toughill. 💖
Victoria
I remember Jeff as a wonderful and inspiring man. He gave hope and important information about these rare diseases to so many people. His contributions to the Histiocytic community are enormous—encouraging and supporting medical research, helping patients and families find care, and more. The world is notably better because of Jeff Toughill. May he rest in peace
Elaine
Such a blessing to our LCH community! I am also a childhood survivor of Histiocytosis-X (diagnosed in 1975) and am so grateful for the wealth of information and hope the Histiocytosis Association brings that was not there for my parents. Jeff’s legacy will continue to help some many!!
Amber
I am so sorry to hear of his passing. He was the 1st person I was able to talk to about my diagnosis. He helped me connect with other people through Facebook and through the Histiocytosis Association. I called him, and he spent over an hour telling me a lot about what to expect, especially as an adult. I am still so grateful that I was able to talk to him. His legacy will live on.
Suzanne
I met Jeff in 1993, soon after my son’s LCH diagnosis. We were able to set together several times after that, in Texas and New Jersey. He was a giant among men.
I can’t even imagine what histocytic diagnosis is would mean today, if not for Jeff’s vision and persistence
Barb Adams
Histio Parent and Histio Ambassador
This breaks my heart. I hope Jeff truly understood how he brought so many lost, fearful, and grieving souls together through the histiocytosis association. Because of all of his efforts he brought hope, love, and support to an ever-growing family. He will be deeply missed, and on behalf of my son and the rest of my family I am deeply indebted to Jeff. May he rest in peace.💙
Tracy
I’m so sad to read this. Jeff was one of the very first people to reach out to me when my daughter was dx. I was lost, scared and searching for something, anything to give me hope. Sending his family so much love as they navigate life without him. 💙
Kelly
God bless this man. 24 years ago his family’s story and his work gave me hope after my 10 m/o son was diagnosed with LCH. My son got married in November and is very happy and healthy. The work of Jeff Toughill lives on.❤️🙏🏼
Claire
This is so very sad to hear. Jeff was the very first person we spoke to after our daughter was diagnosed with HLH. He was there by our sides during some really tough times. He was a truly special person and will be missed.
Jen
We are very sad to hear of the passing of Jeff Jeffrey Toughill! Jeff was one of the very first people that we met in person affiliated with the rare disease Histiocytosis when our child was diagnosed with LCH in 2007! Jeff actually to our hometown of Asheville, NC in spring 2098 to hold a Histio Meet! It was a pleasure to know him! We will be praying for his family!
Tammy
May he rest in peace. Our family will forever be grateful for his advocacy. Our daughter diagnosed with LCH turns 17 on Monday. Jeff helped bring so much hope, and information to the entire Histio community💙💙
Jessica
I am so sad to hear of Jeff’s passing. Jeff was the the first person to give me hope when my son was diagnosed with LCH 20 years ago. Jeff gave me knowledge. Inspiration. Connections. If I could name any angels who came to me in my life when I needed them, Jeff would be one. I know he will continue to be an angel to many as his soul continues on. Rest in peace Jeff, and thank you….so much….for your gift to all of us.
Tammi
I’ll always remember Jeff as an amazing leader and visionary. I’m grateful for the partnership we built years ago with Monkey Grins to send smiles to families with Histio. He has left such a legacy and gift to us all with this community and will be missed.
Kristin Aaron
Histio Parent
So very sorry to hear about his passing. My little daughter was diagnosed in November of 1986 with histiocytosis -x. There was no one out there to connect with until I was put in touch with the newly formed Histiocytosis Assoc. The research that has been done since then is evident of a man’s purpose to help his daughter and all those with this horrible disease. My heartfelt condolences to his family, colleagues and friends ❤️
Patti
I’ve thought of him many times over the years. His was the first voice I heard after registering with the Histio Society on behalf of my 19-year-old son. I had the privilege of meeting him at the family conference in Milwaukee many years ago. Rest in peace, knowing your job was well done.
Jacqueline
I am so sorry to hear of Jeff’s passing. I will be forever indebted to him for the many ways he helped so many including myself along the histio battlefield.
Nancy
I will always appreciate this man. It was because of him that I found out I had LCH.( Histiocytosis-X)I was in my 20s and had an easonophilic granuloma as a child. Noone ever told me and then he reached out to me one day asking about my symptoms from a group he saw and gave me Dr. Kenneth McClains number in Houston, TX. An amazing doctor! Thank you Jeff for having made such an impact in this world for so many
Shining Light
Such sad news.
Jeff was a lovely, lovely man, whose advice when I was going through the worst time of my life after losing my daughter Lili, to HLH on becoming an advocate and how to spread the word about histio I shall never forget.
Sleep easy Jeff, your strength and care will always be remembered and cherished.
Maire Kyriacou
HLH Parent
Jeff met my family and I in Louisiana after we did a fundraiser for histiocytosis. He was such a sweet man. Condolences to his family, may he rest in peace.
Beth
I’ll never forget speaking to him in the early days of my son’s diagnosis. I was panicked, but he had such a calming voice, backed with knowledge and eagerness to help. Jeffrey Toughill gave me the knowledge of gold standards to chase after when my gut was telling me my son’s oncologist, who wanted to wait and see, was wrong – he guided me in the right direction ❤ I’ll always remember the guidance he provided me with in our darkest hour; he was an angel among us.
Amanda
Forever grateful, my daughter was 2 when she was diagnosed with LCH, Later on relapse with DI. I remember reaching out and Jeff personally emailing me back some answers and the folder of info. Easing some fear , because someone knew answers to help. My daughter is nearly 24 and just had a daughter of her own. I pray yall continue the work of a dedicated man that was passionate with his organization. May peace only from our LORD be upon each of you . Many blessings and peace among your hearts of this loss. ❤️
Heather
We are so sorry to hear this. We are forever grateful for the support and education the HAA provided when my daughter was diagnosed with JXG. This organization was a savior and Jeff’s dedication was immeasurable.
Jeannie
Sorry to hear this. My sympathies to his family & loved ones. My daughter is a childhood survivor of LCH. Grateful for the resources and research from the community he created. Rest in Peace.
Toni
Jeff was a beacon of light through some of our scariest days. I will never forget! May he rest in peace.
JackieSue
Thank you, Jeff, for everything you did and the hope that you gave to so many. What an amazing soul!
Lauren
I am saddened to hear this today. Jeff called me in Scotland when my brother was diagnosed with HLH. He impressed on me the seriousness, but gave me hope. Hope that someone cared, and someone knew what to do. That there was a route forward. I’ll never forget his kindness in those early days, and after my brother passed. The world was blessed with an angel in Jeff. May his family and friends take comfort from the regard the histio community has, and will always, hold him in.
Aj
This is so sad to read, although we never met Jeff as we live in Australia but Jeff welcomed us to the Histio Family in 2001 when my son was diagnosed, please accept our condolences🤍💙 to an amazing man that helped many people, not all hero’s wear caps. Thank you Jeff from the bottom our our hearts.💙
Bronwyn
Wow this is so so sad he was one of the many people who had contacted me in july 2016 when my daughter was diagnosed w HLH at just 3 months old its crazy prayers for the family he was such an amazing man. Thank you for everything.
Amanda
Jeff was an integral part of a fundraiser that we had in memory of my nephew who passed from HLH. May he rest in peace. Prayers to his family, friends, and loved ones🙏🏼
Diane
His love and knowledge spread through this community touching each one of us. I am so grateful to Jeff 🙏
Zara
My heart is very, very heavy. He talked with me numerous times when mike was ill. He is always in my heart and I am forever grateful for his never-ending devotion to this horrible disease that has taken so many loved ones. Go in peace Jeff and give my Michael a big ole hug!!!
Sandy
Such a great advocate for the cause and an even better person. Fortunate to have known him.
Bryce
He truly left his mark. What an amazing legacy he gifted us. So grateful for his efforts 💙
Cindy
Thank you for your support in our time of need. May you rest in peace🙏🏻
Ann
I feel sad and shocked to hear Jeff passed away. He was there right at the beginning of our son’s journey in 1987 when there was so little known about histiocytosis and we were so overwhelmed. Even though we live in Israel, Jeff reached out to us and helped and supported us together with others who were active in the young Association with him. It was Jeff who put histiocytosis on the map and set up a whole network of support where none had existed. I will be forever grateful to Jeff and send his family our sincere condolences.
Rose
I am so sad to hear that Jeff passed away. It was only though him and his founding of the Histiocytosis Association, that we got the necessary help for our daughter. We were so far away in South Africa, but he was always so kind and compassionate. Jeff, you did an amazing thing to build this association, and you have left a lasting legacy and helped so many people along the way. May you rest in peace.
Sara
I’m so sorry to hear of Jeff’s passing and I will forever be thankful for all the help through this association that has been provided to help guide our Histio families. 🙏❤️
Bertone
He was a blessing to the histio community.
My son who is now 21 was diagnosed when he was about eight years old and a member having this community to get some answers thankfully, he’s been 100% cured and was one of the lucky ones
Adam
Absolutely heartbreaking Such a great man talked with him several times was such a caring and understanding man who would listen to me and give me hope to push forward May he Rest in Peace
Dawn
Deeply sad by this loss. Thank you for everything, Jeff
Lindsey
LCH Survivor, former Histio Ambassador
We are very grateful for Jeff’s dedication and the amazing association he founded. My son and our entire family are so grateful for the invaluable support and information we have received over the years!
Marty
We will always be indebted to Jeff. He was truly a lifesaver when we met him after Syd was diagnosed. What an incredibly giving man. May his memory be a blessing.
Tracy Martin
Histio Parent
Forever will admire and adore Jeff, a true angel and hero who touched countless lives and moved mountains for our rare disease community. May you rest easy, sweet soul, and we will all keep you alive in our hearts and souls. The HA will continue to grow in support for families around the world because of the heart and passion you gave for most of your life
Deanna Fournier
LCH Patient, Former Executive Director and Board Member
Our family is truly thankful for his efforts. Our condolences go out to his family.
Angela
Rest in peace dear Jeff. He created an Histiocytosis movement that will be continued ❤️❤️ Hugs to his family and friends from all the Spanish / Latin histioguerreros
Fernando Gotz
Histio Parent and President of OR Asociación (Latin American histio advocacy org)
My infant daughter was diagnosed with Histiocytosis in 1992. The Histiocytosis Newsletter became a lifeline for information and a source of strength through shared experiences
Holly
Histio Parent
My sincere condolence to Jeff Family and colleagues , He will always be remembered by all physicians and patients who had directly or indirectly gained their life and support from the eminent contribution of the society in scientific ,clinical and human support of patients. We will be always grateful to his devotion and care
Azza
Histiocyte Society Member – Hematologist/Oncologist