Csnk2a1 Foundation

This nonprofit is full of dedicated individuals who work tirelessly to advance understanding and community for OCNDS. It has been an absolute privilege to work with them. I have been inspired by the number of initiatives from creating access for a global population by translating resources to many languages to helping connect families with financial resources.

It is an honor to be part of this community as we work together to raise awareness, build support, and find a cure. The CSNK2A1 Foundation has become a vital resource, helping to create a global network of support for families, researchers, and healthcare professionals alike. The progress made in supporting individuals living with OCNDS is truly inspirational—transforming countless lives. With its brilliant researchers and continued leadership in both research and treatment, the Foundation not only brings hope but also strengthens the worldwide community dedicated to OCNDS.

Working with the CSNK2A1 Foundation this past year has been an incredibly rewarding experience. I've learned so much, and it's been a privilege to collaborate with such a compassionate and dedicated team. The families we work with are eager to participate, and their positive feedback motivates me every day. It's clear that everyone is united by the same mission, and it's inspiring to be a part of this meaningful work. This is my first experience working with a nonprofit, and I've been impressed by how their culture truly models a strong, supportive community where everyone feels valued and connected.

I have been working with the CSNK2A1 Foundation for around six months, and I am still amazed every day by the work that this organization does to support its families and make scientific progress in the rare disease space! Research on OCNDS would not be where it is today without the amazing individuals that run this organization and the families who volunteer their time and energy to contribute to the cause. Working with this group has inspired me to continue advocating in the rare disease space and I am so glad to be a part of it!

Truly an amazing foundation this has been. Truly dedicated towards individuals with OCNDs for providing better care, understanding and producing research ventures for their better future. I have been a part of this foundation for almost three years. And we started small but gained so much in these years. So many active volunteers and interns truly dedicated for the cause of this foundation. I am very proud to be part of such an amazing family.

As an intern at the CSNK2A1 Foundation, I saw firsthand the profound impact this nonprofit has on families, researchers, and the rare disease community. The foundation bridges scientific research and patient advocacy, funding crucial studies while providing direct support to families affected by OCNDS. The team's passion and dedication foster a strong, supportive community that truly makes a difference.
This internship was an invaluable experience, equipping me with skills in research, communication, and nonprofit work while deepening my appreciation for the foundation’s mission. I highly recommend getting involved with this impactful organization!

The CSNK2A1 foundation is an amazing ressource for patients, families, healthcare providers and much more. They offer essential support and information, empowering everyone to engage meaningfully in children's lives. They are a true inspiration in bringing people together and I am deeply grateful to learn from them. I can't wait to see what the future holds!

We have participated in the golf tournament fundraiser twice and are amazed at the dedication and commitment of everyone involved. We are also impressed with the community that the Csnk2a1 foundation has built to support the families as well as the ground breaking research they are doing.

I had the opportunity to participate in this organizations recent Million Dollar Bike Ride hosted by UPenn Medicine and I was blown away with how well the organization and the event were run! The research the CSNK2A1 Foundation is doing in the rare disease field is so important! I can't wait to see how much this effort grows in time and the learnings gained from their research to help those with OCNDS as well as their families.

The CSNK2A1 foundation is a lifeline for families, a way to connect community near and far, and a ground breaking group of the most dedicated and passionate people committed to changing lives from the inside out. They will build one brick at a time to find the answer to a question, solve a mystery and a problem and do it hand in hand. No one would wish the challenges these families are fighting through on anyone, but this foundation has created a loving & supportive place as a beacon of light for families who may not have had one without it. They are an inspiration to what it looks like to truly love your children for who they are and want the best future for them.

I am so impressed by the dedication of this foundation and its leadership to make a real difference in people’s lives. Because of this organization, those impacted by this rare condition don’t have to feel alone, and they can strive to find ways to improve all of their lives together. It’s a beautiful thing. I’m so glad to support them in any way I can, and I encourage others to do the same!

I am humbled by the degree of dedication, creativity, and genuine hard work the foundation puts into even the smallest improvements they can make in the lives of those impacted by this rare disease. The efforts to bring the community together to celebrate successes and learn from challenges, are inspiring. I am impressed by the attention to detail and effort expended to raise funds to make a difference in the lives of real people. As a board member, I am privileged to be able to get to know the families and all those who support individuals impacted by this and other rare diseases.

The CSNK2A1 foundation is a life-changing organization for all individuals, families, and communities affected by Okur Chung Neurodevelopmental Syndrome. It is a second family, a source of information and inspiration, a support in uncertainty, and a direct line to the best that science and medicine has to offer. the CSNK2A1 Foundation should serve as a model to other foundations looking to support those affected by rare genetic or poorly understood medical diagnoses.

The CSNK2A1 Foundation is a beacon of support and advocacy for individuals and families affected by Okur-Chung Neurodevelopmental Syndrome. Their dedication to raising awareness, advancing research, and providing resources is truly exceptional. Through their tireless efforts, they offer hope and solidarity to those navigating the complexities of this rare genetic condition. The CSNK2A1 Foundation stands as a vital lifeline, empowering communities and fostering a brighter future for all impacted.

Personally I have been moved and inspired by the CSNK2A1 Foundation! This foundation is making ground breaking strides towards a cure for a very rare disease that before received little to no funding. The founders of this Foundation have changed the world for a certain few in great need. I am happy to support this foundation!

When I consider founders to invest in, I look for those with an unwavering passion and drive to achieve their goals; those for whom success is the only option. Among the many founders, entrepreneurs, and leaders I have encountered throughout my career, Jennifer Sills, the founder, truly stands out. Her unique blend of intelligence, persistence, emotional intelligence, patience, and leadership is among the best I have ever witnessed. I am confident that it is only a matter of time before she achieves her goal of finding a cure for OCNDS.

Until then, I am deeply honored to be a part of her team as a CSNK2A1 Board Member, serving alongside this talented group of women - Catherine Landers, Francesca DeMartino, Jamie Miller, Jennifer Allen, Elizabeth "Libbie" Prescott, Sarah (Lazar) Ghavim.

My experience working with Jennifer at The CSNK2A1 Foundation has been nothing short of inspirational. She's the embodiment of innovation in the nonprofit sector, leveraging technology in ways that revolutionize the foundation's operations, including managing her board and advisors.

I'm also amazed by how she juggles all her responsibilities, from running the foundation and advancing research in the field, to supporting the families impacted by OCNDS, all while being an extraordinary mother to her kids. As I navigate motherhood myself, Jennifer stands as a true role model.

We were devastated when our son was diagnosed with OCNDS, but after receiving his diagnosis, we were immediately informed of the CSNK2A1 Foundation, and they have been a profound help to us as we navigate life with a child with an ultra-rare genetic disorder. The foundation provides us with innovative and informative scientific information and opportunities to be involved in various studies, and the foundation also provides us with the opportunity for fellowship with other families with children with OCNDS. The foundation also gives OCNDS families so many opportunities to become advocates for not only our children, but everyone's children. We are so grateful for the CSNK2A1 Foundation.

I am proud to be involved in this community on their journey to finding a cure! They are making incredible strides in support of those living with OCNDS. The CSNK2A1 Foundation stands as the foremost source of information and assistance for families, researchers, and healthcare providers engaged with OCNDS. The CSNK2A1 Foundation has changed the lives of many and continues to create hope as it sits on the cutting edge of research and treatment for OCNDS.

When my niece was diagnosed with OCNDS and my sister sent me the website with its thorough information I was blown away. It was a like a door opened to a magical land where things that were mysterious before were now far more clear, the mysteries of nearly 13 years of constant wonderings of what her life would be. The support my sister's family has received and the connections they have made through the foundation are worth their weight in gold. To know my niece has not met others with OCNDS and knows she is not alone in her experience makes my heart swell.

This foundation is the only organization dedicated to OCNDS. They offer support and fund research. One of the major highlights is that this organization offers translated materials in 19 languages for key resources! Additionally, they host parent zoom calls and have a parent advisory board to help keep the patient voice at the center of their activities.

CSNK2A1 Foundation has been instrumental in my families lives. The information they share is important for families, and the research being done play an even greater role in future treatments. They are a nonprofit, and not many organizations could do what this foundation has done for families.

I am continually impressed by the tenacity and compassion of the CSNK2A1 Foundation - the things this nonprofit has been able to achieve in only a few years is nothing short of amazing. Their unwavering support & advocacy for the OCNDS community is vital! Great work!

The CSNK2A1 Foundation is run by the amazing Jennifer Sills. With her leadership, the foundation has not only provided a safe, inclusive place for those affected by OCNDS, it continues to find ways to spread awareness. Without the support of the CSNK2A1 Foundation, my family and I would be so lost. We are truly grateful

Such a caring and supportive foundation truly moving mountains to lead research in the rare disease world!

I really enjoy work this golf tournament. I enjoy the comradely with the staff, volunteers, and golfers.
Lee Sandusky

I recently had the privilege of volunteering at CSNK2A1 Foundation’s annual Golf Fundraiser, and I wanted to take a moment to express my heartfelt appreciation and admiration for the incredible work that the Foundation does. From the moment I arrived at the event, I was overwhelmed by the kindness and warmth exuded by everyone involved. The volunteers, staff, and participants radiated a genuine passion for the cause and a shared commitment to finding a cure for OCNDS. It was truly inspiring to witness such a dedicated group of individuals coming together to make a difference. The attention to detail and organization displayed by CSNK2A1 Foundation was exceptional. Each aspect of the fundraiser was meticulously planned and executed, creating a seamless experience for all participants. From the registration process to the golf tournament itself, every moment was thoughtfully orchestrated to ensure that everyone felt valued and involved. The event also provided a platform for individuals affected by OCNDS and their families to share their stories and experiences. Their courage and resilience were truly humbling. Witnessing their unwavering hope and determination further emphasized the significance of the work being done by CSNK2A1 Foundation.

The CSNK2A1 Foundation is a wonderful organization dedicated to helping patients and their families. They serve as a resource to the patient community and support leading-edge research aimed at identifying treatments. What one small Foundation has done continues to amaze and inspire me. Thank you for all that you do for our community.

CSNK2A1 Foundation, I am truly inspired by the remarkable support they provide to individuals and families affected by rare diseases. Their unwavering dedication, with their commitment to raising awareness and advancing research, is truly admirable. CSNK2A1 Foundation stands as a beacon of hope, offering invaluable research and assistance to those facing the challenges of rare diseases.

I got introduced to the Csnk2a1 Foundation thru family members years ago and have been excited to volunteer my time and money to this great organization and the people involved in it. Having spent a majority of my career involved in biological sciences and pharmaceutical drug discovery, I have always been saddened by the plight of those stricken with rare genetic diseases. Until recently there wasn't any possible cure or treatment so no one gave them any attention or notice. There also wasn't a market for developing treatments for such rare genetic diseases so one could be assured that nothing was going to change for these unfortunate souls and their families who are equally devastated by these horrible afflictions.
Jennifer and the folks from the Csnk2a1 foundation are changing that. They are helping these people and families who have fallen thru the cracks providing information, support, and a voice of advocacy and hope for these forgotten few. They are raising money to fund groundbreaking research that is leading to better treatments and future cures for rare genetic defects. It gladdens me to see what the foundation has done so far in its short lifetime and I am excited to see the outcome of these efforts in the future!

Jennifer Sills from the CSNK2A1 Foundation is a passionate leader, a champion for affected families and could not be more dedicated to accelerating research. Her community is extremely fortunate to have her. She sets a standard and is an example for other non profits. I'm honored to have followed her work over the last few years and I'm continuously impressed in her constant dedication, work ethic and kindness. Keep moving mountains!

When you find out your child has an ultra rare genetic condition, there’s often nowhere to turn to as even the doctors don’t know enough about it.
We will be forever grateful to the CSNK2A1 Foundation as it gave us a place to turn to when there was nothing else.
The support, sharing of knowledge & understanding of OCNDS and involvement of being part of a community has been invaluable.
Without this, we would not have been able to provide schools with information to support our daughter nor had the knowledge ourselves to be able to understand the condition and be proactive in supporting her through life.
With the doctors who first diagnosed the condition still heavily involved, the knowledge and support continues to grow, helping families across the world.
I simply cannot praise or thank the CSNK2A1 Foundation enough.

I am proud to support this foundation. It was founded by a parent who saw a need for herself and her own family and in the process, she has created a global community. The progress the foundation has made in a short time is inspiring. I look forward to the future with hope and am happy to continue to support the Csnk2a1 Foundation.

CSNK2A1 Gives families an unparalleled level of hope and support to those seeking a potential diagnosis for their loved ones and for those with OCNDS. The pace of the research and and progress that the foundation has made has changed and improved the outlook for so many families around the world.

For years we didn’t have a diagnosis for why our son had developmental delays and some of the challenges he has. From a gene test we finally received one; however, there was little information about OCNDS since it was a recent discovery and, at the time, a little over 100 kids had been diagnosed with it. As we were researching we came across the CSNK2A1 Foundation. After submitting the form, Jennifer Sills contacted us and listened to our story. She was an incredible source of information and support and guided us to where we could receive more. We are grateful for the foundation she has worked so hard to organize and build. Because of this foundation, families like ours have a group of members and parents who understand and can relate to each others struggles and challenges. We love how it is worldwide and how the foundation does everything it can to support families and children globally. We are grateful for Dr. Chung and Dr. Okur and the diligent and continuous research that provides additional information about this syndrome and what families can expect. We know that with everyone working together more research and information will be discovered and the CSNK2A1 Foundation will be a contributing factor in not only providing support and guidance to families who are dealing with OCNDS, but also hope.

Upon receiving our daughter’s diagnosis of OCNDS in 2021, the CSNK2A1 foundation was the first place I came to in search of answers. The CSNK2A1 Foundation provided not only information about OCNDS, but it also provided my family with hope in knowing we are not alone in this journey. There will never be enough words to describe the impact the foundation has made in easing my worries and providing support for the future.

My grandaughter was finally diagnosed about 4-5 tears ago, since then she has had the help she needs to deal with her navigating through the ups and down of this sympton. Her parents have had to keep abreast of all the ups and downs. My daughter is very involve with the organization and is always seeking ways to make life better for her and for them. As her grandmother I’ve also had to learn how to approach my grandaughter, especially when she has meltdowns. My daughter has often had to teach me how to help her. Our ways with child rearing often is in direct conflict with her needs. It is a learning process for all of us. I’m thankful that there is an organization such as yours to help the children and their parents.

The first time we read the words “Okur-Chung Neurodevelopmental Disorder” on a genetic test report in 2019, we finally had an answer to questions we'd had since our child's birth. Prior to this diagnosis, our child had received diagnoses of low muscle tone, reflux, global developmental delay, speech delay, selective mutism, anxiety, binocular vision dysfunction, and autism. As a Syndrome with only two hundred diagnosed individuals worldwide, at first, we felt very alone. We were quickly welcomed into a family, however, by the CSNK2A1 Foundation. When you have an ultra rare genetic condition, most doctors and therapists have never met someone with your diagnosis. As a parent, this gives you the added pressure of becoming the expert. The CSNK2A1 Foundation provides parents and family members of those with OCNDS the tools and support to undertake raising awareness, fundraising for research, and educating doctors, therapists, and teachers, all to obtain the best care possible for your loved one with OCNDS. By uniting us as a family, no matter our physical distance, the Foundation propels our group mission of advancing research, education, awareness, and support for all our loved ones with OCNDS worldwide.

It is impossible to describe how much this organization has given to our family. It has given us — especially her older brother — an understanding of all the issues my granddaughter has had to deal with since birth. It has justified support from schools and government resources that will help her have a long and productive life. Among those resources are support for her parents, enabling them to maintain work schedules. Most important, the activities sponsored by this organization ( fund raising, conferences, etc. ) have given Matilda an identity she is proud of….she is unique !

This foundation was a godsend in the darkest time of our lives. After receiving an OCNDS diagnosis for our son, we were told there were no others with the same condition in our country and we were sent on our way. A quick google search gave us the first glimmer of hope that we were not alone. We are thankful for this foundation every single day. The community that has been built up around it has become our second family. These are the only people who can truly understand our family. The resources provided by the foundation have helped us get the resources/services needed for our son. The CSNK2A1 foundation fights for families like ours every day and gives us hope that our son will live a good life. I don’t think we could ask for more.

After 12 years of investigations, after 12 years of not knowing, after 12 years of not really fitting with any of the diagnoses we finally had our box. My daughter was diagnosed with Okur Chung Neurodevelopmental Syndrome after 12 years of searching. We found this foundation since her Doctors didn't know much about the syndrome and told us to search online. First contact we made was Jennifer Sills. With this foundation we found our home, our family, a place where we fit inside the box. We were not only welcomed with open arms, we became one family. We have made lifelong friends with this foundation. We found strengh, support, love and encouragement that our future for the first time is shining brighter.

I am the mother of a child who was diagnosed with OCNDS after 8 years of searching for answers to our questions about her symptoms. She had difficulty as a baby and toddler with walking, talking, hypotonia and eating. Now her difficulties are learning disabilities and Autism. The gap between her and her peers is widening and it is very isolating being a parent of a child with an ultra rare condition. Therefore we were delighted to discover that there was a CSNK2A1 Foundation providing advice, support, conferences and resources for our community. We are so grateful to the foundation for teaching us so much more about OCNDS and for providing us with a network of support, expertise and access to advice from other families to help us with this journey. This has been incredibly helpful in enabling us to understand and treat the symptoms of the syndrome, it has also given us ideas for what to look out for and what to expect in the future.

My daughter was 16 when we finally got the diagnosis of okur chung neurodevelopmental syndrome also known as OCNDS. We have searched since she was 8 months old when she started having passing out spells. Then i noticed that she wasnt meeting her goals when it came to her crawling, walking, talking, it was all delayed. She ended up with leg braces to help her walk at the age of 2. She was behind everyone at school, her body wasn't developing the way a normal child should develop. We did many tests, bone scans, MRI's, CT scans, blood work, Genetic testing, this specialist, that specialist. Until we finally met with a doctor at sick kids in Toronto, Ontario. Which said he believes she might have OCNDS and that we would have to run a more deeper genetic test after 6 months of waiting we got the diagnosis. Then he told me about a Facebook group for parents with OCNDS as well as referred to Simon's research base out of Quebec which we are helping them with the reseach of OCNDS. They have all been amazing and I don't feel like I am the only one dealing with the diagnosis. We know we are the only one in Ontario Canada that has this condition but online we have a family. Niagara falls light up the falls for OCNDS last year so my family took the drive had signs walking around to spreed awareness

The Csnk2a1 nonprofit was founded by the love and passion of a mother that was relentless in finding a diagnosis for her daughter’s rare disease. Rather than stopping there, she went on to build a foundation that supports not just research and treatment for those impacted with Okur-Chung Neurodevelopmental syndrome, but the families that now know they are not alone. The drive of one individual has resulted in a world wide community for those caring for children with this rare disease. It is an honor and pleasure to be affiliated, to donate and to share in the events that make this community so special and impactful.

This charity offers so many resources for parents / friends / family / medical professionals and teachers to understand what CSNK2A1. The key is education for understanding and acceptance.
We have the best community of parents who support and lift each other up.
The scientific board keeps the research moving forward that one day we may find a cure for our children.
When we have annual conference for our members it is the best. So many families are able to share their stories and feel accepted.

In 2016 a family members daughter was diagnosed with OCNDS. At the time she was one of the first diagnosed with this rare condition and information related to this syndrome was not readily available. The family immediately began their search for more information and a treatment plan. They started a community where others with this rare condition could find love, support and answers. In 2018 they founded the CSNK2A1 Foundation, and in 4 short years the strides that this foundation has made are remarkable. They now hold an annual conference, multiple fundraising events throughout the year to fund ongoing research, as well as monthly family support calls, educational webinars, scientific round tables, and the list goes on. I volunteer at the annual golf event and am proud to be part of this community. Hopefully one day the research will result in a cure.

The Csnk2a1 nonprofit drives research and treatment development for those impacted with Okur-Chung Neurodevelopmental Syndrome. The Founder is extremely passionate, professional and dedicated. This organization inspires me and has proven that when a group of caring and dedicated people work towards a single goal great things can be achieved. I am proud to be involved in this community on their journey to finding a cure.

I feel proud to serve on the Board of this foundation! They are moving mountains for those living with OCNDS. CSNk2A1 Foundation is the number one resource on OCNDS for families, researchers, and providers. The Foundation is also funding 99.9% of OCNDS research. The 3 tiered Board structure ensures that the patient-voice is front and center in all decision-making. Genetic conditions once thought to be untreatable and uncurable are now being treated! OCNDS will be part of this scientific revolution. There is HOPE!

The CSNK2A1 Foundation is the leading research organization studying Okur Chung Neurodevelopmental Syndrome. They have annual conferences for families and scientists and contract with research facilities all around the world to learn more and hopefully one day find a cure.