Messages of remembrance.
Cindy was an inspiration to me. Dedicated, hard-working, kind, and filled with faith that she would join her loved ones. She was always driven to do the right thing for her family and for her organization. I will truly miss her. She's gone too soon but I hope she finds the peace that she deserves.
~ Susan Berry
Cindy was everything to me. As a patient myself and meeting her when I was teenager, we went through many life issues together. She inspired me to become the patient advocate I am today. I will never forget her unwavering support no matter what I was doing. She became like a mom to me. I always wanted her advice for anything otc related. I promise to her to keep NUCDF going until we find a cure.
~ Kristy Mccracken
I was heartbroken to hear of Cindy's passing. I remember thinking during my very first conversation with Cindy 15 years ago that I had met a remarkable woman. My admiration for her only grew though the years. My gratitude for all she has done for my daughter and me is endless. Her selfless dedication to NUCDF, advocating for those affected by UCD and her laser focused efforts to develop treatment and find cures set the gold standard in the rare disease community. She changed our lives with every phone call, as I know she did for so many others. Sending my deepest sympathy to Cindy's family and the NUCDF team. I will miss my dear friend.
~ Kathy Roberts
Cindy was, simply, an amazing person. She worked tirelessly to further research and understanding of UCDs, and made tremendous strides for the community that cannot be replicated. Most importantly, she was a kind, understanding, and gentle individual. We will miss her so much.
~ Samantha Vergano
I'm at a loss of words. I don't know where I'd be if it weren't for Cindy. She answered the phone at 12am after I lost my newborn son‚ I had so many questions that nobody else could answer‚ she cheered me on through the journey to having healthy children. Cindy had a way of being there whenever there was an emergency- she dropped everything on a dime until she made sure the crisis had passed‚
She was an incredible light to soooo many. Through the years, Cindy shared her vast knowledge, introduced me and my kids to Ucd specialists, other families (and kids) that had been through and are still going through the ups and downs of this tragic disorder‚ and symposium‚ she had a giant heart. We have really lost such a blessing in our lives. Sending my love and condolences to her family and loved ones. You will never be forgotten, my dear friend, never. May we all continue the search for a cure in her memory.
~ Danielle S
I need to this remembrance in my native language, Which is spanish. God is with and within you Cindy, thank you for being for me and my family when we felt lost. Gracias querida Cindy por acompañarnos en la caminata y entender el déficit de OTC 20 durante estos últimos 13 años. Gracias por responder mis mensajes, por hacerme sentir parte de la comunidad mundial de OTC. Dios consuele a su familia y amigos. Gracias por tu existencia, tu trabajo, tu visión.
~ Priscilla Herrera
Cindy was the first person we spoke to in the UCD community after our daughter was diagnosed with ASA. I remember crying while I spoke with her because she understood exactly what I was going through and was so sweet and genuine in her care for us and what we were going through. We met her about 6 months later and she was so excited to meet us and to hold our little baby .I was amazed by her drive to find a cure and all the work she was doing for our community. She will be so missed. We were so blessed to have known her.
~ Jessica Wear
Cindy was a powerhouse, a force to reckon with. Thanks to her vision my son is thriving and living an amazing life. Thank you for always being there for us, and for working tirelessly and fiercely for all of our children. I will miss you dearly, and I will treasure you in my heart always!
~ Marifi Escobar
When my daughter Cattarah was diagnosed 21 years ago Cindy was the first person I talked to. She told me if I didn't learn everything I could about Urea Cycle Disorders (OTC) my daughter would not survive. Cindy taught me what I needed to know. She has been there for us the 55 times Cattarah was hospitalized over the years.
~ Cyrene Caringer
Cindy was an angel in this world and I know she will be an angel from the heaven to all of us...Its the first person I contacted when I was felt lost 16 years ago when I learned that my daughter has ASA...with her love and kindness all this years she gave me me strength to continue with the unknown...she always had the right words to tell me when I was feeling alone... I could talk for Cindy with out stop but I believe its better to share a part of her last email to me because its the only way for everyone to feel her sweet heart and her greatness of her soul ..."I wanted to write and tell you what a blessing you and Zenia have been in my life, how much I love you both even though we have never met in person, but we share such a close bond of the heart and spirit. It has been such a privilege to be of help to you and I want to assure you that NUCDF will continue on for you and Zenia. Again, you have both touched my heart forever, and I will do whatever I can from heaven above to continue to help! J I believe we will see each other one day in heaven where there is no sorrow or tears, only joy and love beyond understanding! Sending hugs and love, There no words... just respect to the best person I ever met... Thank you God for this bless!
~ Mom Yiouli
Such an inspirational lady that offered us so much support. Rest in peace Cindy.
~ Christine Wylde
Our family is at a loss for words in learning of Cindy's passing. We offer our deepest and sincerest condolences to Cindy's family, friends and those that had the privilege to know her. Cindy held, holds and will forever hold a special place in our families hearts. She came into our lives unexpectedly 10 yrs 3 months ago when our Isabella was born and diagnosed with ASL. When we were lost, Cindy provided direction, when we so often needed clarity, she gave unfiltered advice, when we thirsted for hope, she gave heartfelt support and love and when we needed a true friend, we didn't have to look far‚ a mere phone call or FaceTime away, always. Thought of often, missed today, lovingly remembered, never forgotten.
Love, Derek, Mandy, Josie and most of all, Izzy Mirrejali-Lackey
As a mother of two children diagnosed with ASA in 1990 , support was so limited and the feelings of isolation were real When I found the NUCDF, Cindy was the connection of support, validation of our experiences and love At conferences she always knew us and sincerely shared her concern and love. She has inspired so many to be better people and the work she has tirelessly done will never be forgotten.
~ Julie Scott
Cindy was such a wonderful person, very kind, welcoming and comforting. It is such a loss that she is gone, but she will never be forgotten! Sending comfort and prayers to her family.
~ Pamela Northrop
20 years ago i was lost I'm with my daughters diagnosis of Citrullenimia. I found Cindy's name on the internet and contacted her. She assured me i would not walk through this battle alone. There were many nights in crisis she stayed on phone with me all through the night. She got me in contact with specialist to guide our doctors in my state. She was truly my rock in the scariest and darkest days‚ she has been the driving force of advancements in the UCD community and we are all forever thankful. Even though we had not spoken in years, it was always reassuring to know she was a call away in a time of need. She will be greatly missed.
~ Michelle Bowen
Cindy LeMons was our most passionate advocate for families. Her life and her memory are a blessing to each of us affected by UCDs.
I don't personally know anyone else who so dedicated the entirety of their life to giving to others. Cindy truly lived a life of service, graceful, tenacious, loving service to people in their darkest hours, by sharing knowledge, offering information to empower decisions, answering the phone and listening with compassion, and holding space with families in their loss and grief. So many people are living healthy, full lives because of Cindy.
I only met Cindy once in person, at the National Urea Cycle Disorders Foundation research conference in Washington, DC in 2017. But prior to that meeting, I had many emails and phone calls with her. In my 20s, my interactions involved participating in research studies to help determine genetic causes of UCDs. At the time of my first pregnancy in 2004, Cindy helped reassure me of how unlikely it was that I was a carrier (unconfirmed until just five years ago when the root of my sister's genetic mutation was finally discovered at age 49) and guided our genetics counselor how to develop a backup plan for our care.
More often our conversations were about my sister, helping my family sift through the value and safety of research opportunities to make informed decisions. Sharing the most up-to-date research. Connecting them with doctors. Most recently, she coordinated webinars for families to hear from UCD specialists about navigating COVID-19 infections and vaccine information, our population being among the most vulnerable. The hours Cindy spent with my family alone is a very small example of the compassion and love she poured into families worldwide.
Cindy would drop everything to speak to any family, from anywhere around the world to guide them through symptoms and how to get a diagnosis. She counseled families whose doctors would not listen, helping them get reliable information and connecting them with geneticists and physicians who could help them and their children. She would do this at any hour, knowing that time was precious and a matter of hours meant the difference between substantial death and survival.
If all Cindy accomplished in her life was the time she gave to families, that would have been more than most of us do. But she was also a fierce advocate for fundraising and research into UCDs, navigating the medical system and engaging medical schools, researchers, and doctors around the world. She ensured the dollars the NUCDF raised went directly into research, collaborating with doctors to create fellowships for researching UCDs. She connected families to research studies, often helping them translate if a study would be beneficial and safe for their unique situation, always working to move our understanding of UCDs forward. This research was integral to the development of new medicines, medicines that have kept my sister out of the hospital after spending her first 21 years always on the verge of a crisis.
My heart is heavy to learn of her loss. Our community will feel her absence for years. But I am so thankful for the life she lived and all she gave.
~ Melissa Von Rohr
There will never be another like her. Just knowing Cindy was there was such a comfort to our family when my niece was diagnosed with OTC deficiency. They developed a truly wonderful relationship over the years. Cindy was a remarkable, incredible human being who cannot be replaced.
~ Marianne Arnold
While Cindy did not have biological children, she was a second mother to her nephew who had OTCD, and she was like a member of the family to all the other children and their parents who had urea cycle disorders throughout the country and beyond. She provided comfort, knowledge and advocacy. She did not walk away from contentious relationships when she was working to protect families from regulations and costs she felt were prohibitive. And, she told we clinicians and researchers what the families and she expected from us. She was a tiger and she never gave up. She cannot be replaced, but we can continue to learn from her example and from the love and care she provided to all of us.
~ Mark Batshaw
I am so sorry to hear this very sad news. Cindy was an icon among leaders of PAG and has been instrumental in the success of the UCDC. She did a lot of good for patients and families with UCD. Cindy will be missed by so many, both families and colleagues. I would like to convey my condolences to her family and the NUCDF membership. May her memory be blessed.
~ Mendel Tuchman
Cindy, a great friend and ally, a sister, Mom, a guardian angel all in one. Always there to listen and guide and help to network with other families and doctors. Our family are deeply saddened by your passing but know that WE will always be GRATEFUL for everything you have done to us and to the NUCDF community. Thank you. We will really miss you a lot!!!. Love and prayers always...
~ Erna , Roland and Erin De Leon
I "grew up" with Cindy and NUCDF. Cindy transformed NUCDF and made it into the dynamic and visionary organization that it is today. Cindy's fingerprint will always be on this dynamic institution going into the future. I will also miss her on a personal level. We had a long-standing friendship and until Covid hit would have lunch together in Pasadena at least yearly. We have lost a treasure.
~ Stephen (Steve) Cederbaum
Cindy was a pioneer and advocate for those with rare diseases. Her legacy lives on through her many contributions which have positively impacted clinical research and benefited patients. I had the pleasure of interacting with her as a research coordinator over the years. I'll always remember her warmth and smile, and her work ethic filled with passion and care. My thoughts and prayers to her family and friends. May she rest peacefully among the Angels.
~ Alyssa Tran, BS, CCRP, Baylor College of Medicine
What can any parent struggling through a crisis say...Cindy was there..helped me through some of my darkest days when losing my son and later my grandbaby son. She listened, she helped in ways no one near me could..she understood the pain we endured. May her dedication inspire many more to help find a cure for these horrific UCDs. Thank you Cindy...
We appreciated your help and guidance. May her spirit surround our loved ones we lost much too early.
~ Theresa Czubakowski and Jennifer
In the early hours of 23 November 2013, we came across the NUCDF. At the time, our brother was having a hyperammonemic crisis. It was the first time we came to know he had a OTC. We still have the correspondences between ourselves and Cindy in those early days. Cindy provided a calm and rational response to us. It was what we needed to get through those early days.Though our brother now has severe brain damage after his hyperammonemic episode, it was reassuring to learn from Cindy that no matter what, we wouldn't be alone in the journey we had now found ourselves on. I hope Cindy's work for people like my family, who are at crisis point, will be continued by others within NUCDF. From our family to yours, thank you Cindy. R.I.P
~ De Crescenzo Family - Melbourne Australia
I had the pleasure of meeting Cindy when I worked in Human and Molecular Genetics at Texas Children's Hospital/Baylor College of Medicine. Cindy's life's work was to find a cure for urea cycle disorders, to educate and support UCD families, and to be involved in cutting edge treatment modalities by partnering with metabolic physician and dietitian experts. After moving to Mayo Clinic in Rochester, MN, Cindy offered her support for our IEM clinic in MN. Cindy was an exceptional leader and collaborator. I am honored to have known and worked with Cindy, especially in support of her nutrition management dietary program and grant support, and I will miss her, dearly.
~ Suzanne Boyer, RDN-AP, LD, CNSC, FAND
Cindy was the first person to come up to my husband and I at the NUCDF Family Conference in Anaheim in 1999. It happened to be the same week our 20 month old son was diagnosed with OTC. Fortunately , we only lived about 30 minutes away and I believe was "arranged from above " that we were so lucky to have the amazing resources and support literally in our back yard at the same time that we were in such dire need of guidance and support. Cindy introduced us to other families and doctors and vendors that were incredibly comforting and gave us hope that would could ride through the storm of urea cycle disorder. Cindy was ALWAYS available to help guide us through many (I honestly lost count) hospitalizations over the years and is responsible for saving our son's life on multiple occasions. We will never forget her dedication to our family , as well as hundreds of other families over the years. She was the most knowledgeable person on Urea Cycle Disorders I have ever met that was not an MD and anyone that met her could attest that her expertise would rival any metabolic physician. Cindy was passionate advocating for families and driving NUCDF into the future with the sole goal for a CURE for Urea Cycle Disorders. Cindy will never be forgotten and her legacy will live on through all the families she has so deeply affected with her caring , compassion and knowledge.
~ Amanda Sonntag
Cindy was the quintessential advocate, the standard by which the rest of us lucky enough to have known her measured our own success. Her dedication to the UCD community was her driving force, but she found time to also be a mentor, loyal friend, and trusted sounding board for those of us who, who like Cindy, work diligently to improve the lives of people with rare disorders. She touched so many lives through her leadership with the Rare Diseases Clinical Research Network. Her work with the NUCDF was a model for us all.
I am so very sorry for the profound loss to your community but know that Cindy would, of course, have made sure the NUCDF was in good hands and your phenomenal work will go on.
~ Michele Manion
Cindy was one of the first people I met when I walked into my first NUCDF conference about 25 years ago. After dealing with my son's rare diagnosis for the first year of his life, walking into a room full of other folks that ‚get it‚ was like a warm & welcoming embrace. Cindy brought us into the fold, immediately fell in love with Nate and continued to support, encourage and guide us as I have watched her do with countless other families through the years.
Cindy was a force, and I am in awe of her passion, drive, commitment & vast knowledge of UCDs. She seemed super human at times. It was our profound blessing that she dedicated her life to NUCDF and even more so to the families that make up NUCDF. She is clearly irreplaceable, but we will have to find a way.
~ Lori Shockey
