The Bobby Jones Foundation helped me learn about my condition and ways to advocate for care. They are phenomenal resource, provide support and education to inform care. It is and organization that has a strong sense of community. They show up when you need them.
I found the Bobby Jones CSF when I was diagnosed many years ago. The first time I walked into a support group meeting and met others like me and the staff I knew that this was where I fit. I didn't feel alone and felt so validated. I have been a volunteer with the organization since. I have been a long time walk chair and we join as advocates at the hill each year. The wellness sessions have been unbelievably helpful and the educational videos are amazing. I also look forward to the support groups where I have met some amazing friends who mean so much to me. This organization has provided myself and so many others with guidance and friendships during the most difficult of times. I am beyond grateful for the Bobby Jones CSF.
The Bobby Jones CSF has changed my families life. Not only do they put patients first and care about individuals with these diseases, they also advocate at every level for patient care to get better. It is truly a group of special people who are changing lives fir the better each and every day.
This organization is hands down the best support I could ever dream of. They have so many avenues of information through their website, such as videos with top docs, some allowing the patients to be on the call so we can ask questions directly to the doctors and hear the answers while on the call. They offer a monthly support group zoom call that has literally helped me more than I could have ever imagined. I have made friends with these people that are like me, they understand me and they have made me feel wanted and heard,. It has taken me years to get here with my diagnosis’ and I don’t know what I would do without their help and guidance. I love these calls so much I actually did one this summer from my car while I was at my granddaughter’s softball tournament. These people have become important people in my life. I went to one of my support buddies yearly walk that she organizes. I had told her I probably couldn’t come, however, I had planned the whole time, if I could get there, I would go to surprise her. I got to go and it was amazing. I have never felt so much acceptance, kindness, people there that get me, and a lot of them have been through a lot more than me. I felt a mental high, to be able to meet my support group “buddy” and see the other members that are in our group, it was amazing, I felt validated, being around people that are like me. It was awesome!
My company has filmed for Bobby Jones CSF for more than a decade. We've traveled all over the world to capture then share educational events with folks online looking for help or to learn more about Chiari, Syringomyelia and related disorders. I've had the pleasure to work with and film some of the brightest medical professionals in the world, including neurosurgeons, neurologists, radiologists, physical therapists and more. They are, hands down, the best of the best. I know the research they're doing, thanks to Bobby Jones CSF bringing them together, works and is making strides. I've had folks who have found the videos online thank me for connecting them with these doctors and other professionals. One mother met me at an event and credited me for saving her daughter's life. In reality, they only found a video I created for Bobby Jones CSF that led them to the doctor that saved their daughter's life. That alone has made my work with them worthwhile, and tells me the outreach Bobby Jones CSF provides, indeed, saves lives. Without Bobby Jones CSF, lives would have been lost. Instead, Bobby Jones CSF is saving them.
I have used and shared information from their website for information on Chiari, Syngromylia, and CSF leaks. Surprisingly, even finding information about the connection of Ehlers Danlos Syndrome and Chiari Malformation. I've also been able to find a comprehensive list of knowledgable physicians. Which is exceptionally helpful for me because I have moved so much. Not to mention being able to share that list with other people, who were desprete for a knowledgable physician. Over the years, I've watched multiple of the Educational Lecture Videos that have been produced by BobbyJonesCSF.org They are an endless sorce of information. The ultimate pleasure was this past summer when I was able to attend one of the Educational Lectures in person. The original speaker was unable to make it, but much to my astonishment, they rescheduled with a speaker that was planned for a future talk but was there. Dr Courtney Gensemer from the Norris Lab. What a pleasure! Meeting everyone from Bobbyjonescsf Dr Courtney Gensemer and Dr "Chip" Norris was such a highlight of an otherwise exhausting medical trip. I am so very grateful for this organization!
Bobby Jones CSF does fantastic work for patient advocacy, patient support and research. I am a medical provider and often direct patients to their website for information adn support. A great group doing important work!
The Bobby Jones Chiari Syringomyelia Foundation (CSF) has been a light in the darkness for so many who suffer. I have heard so many patients talk about how they were lost and felt alone when they got their diagnosis of Chiari or one of the other disorders that come along with EDS. They found the information they needed through the CSF and found a community of support through their online or in person support meetings. My family and I are very grateful for this organization!
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The Bobby Jones CSF has helped my family through so many health challenges by providing educational videos and support groups. There is no other organization that has helped as much as this one. The research and education that they are doing gives me hope that perhaps someday my grandchildren will have medical providers with the knowledge to diagnose and treat them before the damage is irreversible. Thanks so much for your dedication and hard work!
The staff is always helpful and provides support groups and educational lectures for patients. Research is shared with scientists, physicians and patients. There is also peer support that is very helpful to understand what other parents have done. This is a really wonderful nonprofit!
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Bobby Jones CSF has been my rock during the pandemic! I was able to get weekly support through their virtual support meetings. Now I am able to attend the "Ask the Expert" series to ask questions to medical professional and learn more about my disorders. They have a very caring staff and I grateful for the personal support.
Bobby Jones CSF is an amazing organization that truly puts money towards its mission. My daughter underwent brain and spinal cord surgery in 2022. We hosted a walk to raise money for the organization and Cathy went above and beyond to help us make it a success. We also joined them in Washington D.C. for Unite at the Hill. It was such a great seminar and experience for our entire family. I am so grateful that we have this organization that is truly funding and supporting life saving research to help more patients like my daughter.
Suffering from insidious neurological symptoms that slowly diminish life's vibrancy is like entering a disorienting tunnel. To others, one may appear well with symptoms attributed to stress - "it is anxiety that makes you so." The response - withdrawal. A slow pulling away from those that doubt, from activities one enjoys as vibrancy slowly ebbs. Turning to a health care provider often results in doubt, and the slow downward spin continues.
Into this breach comes Bobby Jones CSF. Knowing, understanding, caring, helping, and most importantly, revealing the reasons, putting the pieces together. Slowly, a window is opened to where this threat begins in our complex brain. Deep in the vital core of our brain - a neurological labyrinth - our being is under threat. A slow, slow squeeze distorts, misshapes, and weakens our being—a slow reemergence of being begins by holding hands with CSF.
I am honored to have worked with this organization for at least a decade. What impresses me most is the ability to take goals into action. Everyone at the foundation works extremely hard for it to be successful. Additionally, education is a high priority. The foundation has produced content for patients and families, but they have also consistently worked to bring professionals together to move the research forward. They have fostered a positive environment of collegiality among everyone involved with the foundation and I believe this has contributed to their success and longevity.
It is a privilege to serve on the board of directors of Bobby Jones CSF! I am a patient and mother of two young adults who are affected by Chiari, Intracranial Hypertension, Ehlers Danlos Syndrome, and other associated disorders. Our family has so much respect and appreciation for the great and very necessary work of Bobby Jones CSF!!! We would be lost on this medical journey without the foundation's brilliant research, along with the patient education that is provided.
Serving on the board of directors allows me to witness firsthand the groundbreaking research that is being conducted, providing my family and I tremendous hope! We have spent years being misdiagnosed and misunderstood. Bobby Jones CSF is changing that for families like mine.
Through the genuine and profound collaboration of physicians, employees, board members, volunteers, and donors, Bobby Jones CSF continues to pave the way for a better tomorrow!
As a neurosurgeon and Board Member, I continue to be humbled by the mission of the Bobby Jones CSF Foundation. The staff continue to amaze me with their focus on the child or adult with this condition and what they can do to advance the field to make a difference through research, advocacy, collaboration across the globe, and a caring heart . The impact this foundation has had on this field is extraordinary and we owe this progress to their team. We have a long way to go and more work to do, but I could not be more proud to be associated with the volunteers of this great organization.
I am a pediatric neurosurgeon with 30 years of experience of treating patients with Chiari malformation and Chiari-related disorders. In my opinion, Bobby Jones CSF is the undisputed leader in all areas of patient advocacy, education and research support in the Chiari field. The people, the organization, the caring....everything....is wonderful and first class! Thank you so much BJCSF for supporting physicians and other health care providers in this field!!!
I am a recently retired neurosurgeon and for over 40 years have cared for children and adults with what has been called Chiari I malformation many of whom have syringomyelia as a result.
Since about 2012 I have served on the medical board of the foundation and now remain active in it but as emeritus. With the energy of the foundation much has been accomplished with the education of not only the patients and their families but the myriad of healthcare professionals. The condition is extremely complicated and to some extent has been misunderstood. During my decade of involvement with the foundation I have learned a great deal from the patients and families of what is important to them to make certain that the patient have the best of all outcomes. I am particularly involved in the biomechanics of the brain and intracranial pressure with the support of the foundation. I will continue to work with the foundation to improve the care an outcomes of the patients. that are served.
My affiliation with this affliction and this disease began about 22 years ago when I found out my first grandchild had Chiari. At 2 years old, he had serious issues and ultimately he underwent brain surgery. Very, very successful...he is now 25 years old and fully cured and very active. Here's the problem...in the past twenty years I have met many a young person who has had brain surgery and is not cured. They live very, very difficult lives. My hope is that we can find a cure or something to help them live somewhat normal lives. The Bobby Jones CSF organization is the preeminent organization to help do this.
This is an organization that puts the "patient first" always. It is does everything. It produces high quality educational material, supports patient inquiries, and fosters impactful cutting edge research and innovation that contribute to improvements in patient lives. The professional and patient led leadership of Bobby Jones Chiari and Syringomyelia Foundation is both remarkable and visionary. This organization is simply magnificent and I lean on them to help our patients!
As one of the co-founders of this organization, I am proud and thrilled with how far we have come since 2007. Once a fledgling start-up, we are now THE PLACE for patients, caregivers and physicians alike to go to for the latest information on Chiari, syringomyelia and related disorders. I credit our amazing staff for the transformation of our organization. You will not find a more intelligent, dedicated and resourceful group of people anywhere.
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As a member of the board of this fine organization, I feel compelled to compliment our executive director and her staff. Nowhere have I met a more dedicated team of people. They work tirelessly, going above and beyond the call of duty, to make sure that the charity is successful, reputable and respectable. Each and every one of them views their position as a "calling" rather than simply a job. Chiari and Syringomyelia sufferers, including my 15-year old son, owe much to these dedicated women.
I first walked with CSF in 2016, 4 months after my decompression. Then I began chairing the Las Vegas walk and from the other side of the country I have made a family with people as passionate about finding an answer and a cure. When I was in Cleveland for a medical procedure, the national chair took time to visit with me and my mom and listen to my story firsthand after only speaking on the phone or by text. I appreciate that they checked on me during the pandemic and have never wavered in their encouragement
I have been a unite@night chairperson and host a walk in my area or at least try to. The last few years have been difficult on me but everyone I speak with at Bobby Jones CSF has been amazing. There is so much to learn because I was diagnosed in December 2016 and still don’t understand a lot. At times I go to the website to show my drs that don’t understand it information on it. Mrs Cathy as busy as she is checks on me as well to see how I am. Just all around a great group.
I have been a volunteer for Bobby Jones CSF for the last several years, while attending high school and college. I am always so impressed with how this organization is able to reach so many people across the country and the world with their online education lectures. They help so many who are looking for answers. I look forward to working with the amazing staff, as a volunteer, for years to come.
Connective Tissue Disorders are the actual modern epidemic, because they are ignored by the medical establishment. Chiari caused by CTD is basically a new kind of disease, and is thus unknown to med school textbooks. Only truly-thinking doctors understand the anatomy of this disease, which is why locating competent treatment is so difficult. Too often the wrong treatment is applied (suboccipital decompression without cranio-cervical fusion), which is why outcomes overall are not good enough.
Bobby Jones CSF is the leading organization in combating the unrecognized CTDs, outperforming other orgs by:
- funding actual research
- hosting support groups that achieve better benefit per-person
- maintaining credibility among doctors and other influential entities
My dog had a bad seizure and she ended up having an MRi where they found a chiari-like malformation. I was told that there were videos with info about this disorder in dogs on this organization's website and they were really helpful in figuring out what to do next. I didn't realize this was something that humans get too. I was also really excited to see that they even worked to fund research in the area. Very helpful experience.
I've been a donor of Bobby Jones CSF for many years and I've attended several of their events over the years. I am amazed at how they are able to bring so many people together to share their collective experiences dealing with Chiari, syringomyelia and related disorders. The staff and board members are so devoted to the cause and they inspire so many others. I've truly been inspired by their dedication and support of patients and their families. I look forward to seeing what more fantastic things they do in the future.
The Bobby Jones CSF has been amazing for my family. We are beyond grateful for the amazing research, the education and support for patients, caregivers and physicians, and the advocacy for all of us who suffer with these illnesses. The educational lectures have been incredibly helpful for our doctors who don't quite understand our illnesses. They are also extremely helpful to the patients and our family members who are attempting to understand our complicated health.
It is really difficult to be an adult diagnosed with a rare disease, but when your kids suffer as well you can feel so alone and helpless. The Bobby Jones CSF has connected us to other families who understand our struggles and have made our family feel like we are not alone. The support groups have connected us to other families who started as strangers and have now become friends.
When you are diagnosed with a chronic illness it can be difficult to make sense of your pain and often makes you question your purpose. The Bobby Jones CSF provides opportunities for patients to join in with advocacy such as unite@the hill and the unite@night walks. These opportunities can often make patients feel as if they have a new purpose. Through the advocacy opportunities that the CSF has provided my boys have learned how important it is to fight for their health and to take part in fighting for change. They have also become better public speakers by going outside their comfort zones and telling their stories at events and have met some amazing peers who can relate to what they have been through. These life lessons are priceless and have been a silver lining to a terrible illness.
Our family is extremely grateful for all the hard work of the Bobby Jones CSF. They have been the light on what started as a dark journey.
I have learned so much about Chiari Malformation through the Bobby Jones CSF Organization. The Unite at Night Walk is my favorite event with this organization. I’ve also been able to go to lectures , in person and virtual, which has helped me learn so much more about Chiari Malformation
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Csf has educated me, my family, my walk guest and plenty of others with research, lectures, brochures, and many more resources. The people who run this organization have lifted my spirits while struggling and supported my overall wellness. I have made many lifetime friends and aquaintances through them and will forever be grateful I stumbled across their website in the wake of my illness.
Our son was diagnosed with Chiari and Syringomyelia. We are thankful that we found Bobby Jones CSF, an organization shedding light on these life-long conditions. The videos and physician lectures offer great education and awareness. Keep up the good work!
Such invaluable information and resources. I finally found a support group as well with them. I am so thankful for Bobby Jones CSF!!!
Bobby Jones Chiari & Syringomyelia Foundation was the answer to years of searching for answers no one had. The foundation is a treasure trove of information that is not only easy to understand, but for us, it was the link to communicate to those in the medical field trying to help care for us as well. This foundation has helped our children's pediatricians understand how to best help with their care. As a mother with these conditions, this foundation has been an answer to prayer for support, for the community, for education, and for the hope that better treatment and answers are out there.
My name is Nichonar and I was diagnosed with Syringomyelia in December 2016. I found this Foundation via a Google search, after being urged to find help for my condition. The first event that I attended was their "NYC 4 CSF" event in New York City. I didn't really know anything about my condition or even what to expect at the event, but it turned out to be a great event - the event was packed with people who also have Syringomyelia, as well as many others. I never felt so supported before - living with this condition and trying to find and receive support from people is very difficult, but the Bobby Jones Chiari and Syringomyelia Foundation (it is now re-branded to this), is a leader in providing research, educational videos and virtual support meetings. I have attended other events and found them to be fun, relaxing and, honestly, good for the soul. Through their events, I also met several doctors and other medical professionals who, through one-on-one discussions, have provided valuable information about their experience helping patients with these conditions. Though we are all struggling in our daily lives to live with these conditions, it is so important to connect with others to learn more and to just know that we are supported - that is a key component to the work of the Bobby Jones Chiari and Syringomyelia Foundation. Further, the ladies that handle the many aspects of the organization are very helpful as well. I wish whoever is reading this the best for their health and wellness.
I'm a survivor. Of alcoholism, valley fever, fungal meningitis, and syringomyelia.
I was diagnosed in late 2016. Syrinxes were causing numerous symptoms: numbness in hands and feet just kept getting worse. Occasionally lightning bolt type sensations hit me without warning. In January 2017 I had the first surgery to remove 2 syrinxes and then in March they removed 1 more.
The Bobby Jones Foundation gives me hope that progress is being made in curing this disease and they are educational.
When a family is new to our co-morbid medical conditions and they are told "it's just a syrinx, nothing to worry about." What would you like to share with this family and suggest for rule out testing before making a solid decision in what direction to fallow up on?
I have Chiari Malformation and Tethered Cord. I have had r surgeries done by the best Neurosurgeons Dr.s Milhorat and Bolognese. I am always interested in groups who support research and assist patients.
This foundation is so wonderful and amazing. They do so much for everyone and do everything they can to make sure there is awareness and information for those in need. I am so grateful that this organization exists! Our daughter and myself suffer from Chiari, this organization has provided information and peace of mind to our family!
CSF is an amazing organization that brings education and awareness to the public. I will always use them as a reference for any questions I may have.
I became aware of the Bobby Jones CSF after being diagnosed with Ehlers Danlos Syndrome and Syringomyelia. I don’t know what I would have done without the information provided on their website. I’ve since seen several doctors who are part of the medical advisory board and watched numerous lectures from leading experts on the BJCSF YouTube channel. I’ve become a more informed patient and have been able to better advocate for myself and my children when seeking medical care. I believe the work being done by the foundation is so important that I have now attended two conferences and spoken with congress members at their unite@theHill event. They are the only organization in the world that I know of that provides the depth of knowledge about Chiari and Syringomyelia, as well as the resources needed to live day to day with these conditions.
There are SEVERAL Chiari, Syringomyelia, and related disorders foundations out there, but NO OTHER has the credentials, experience, and dedication Bobby Jones CSF has!! They are the epitome of a great, hard working foundation on the behalf of patients and their families!! They go the extra mile to be transparent, to make sure everything is correct. We feel so strongly about their good works, our yearly gifting goes to Bobby Jones CSF!!
This foundation, hands down, does more groundbreaking research, education, and advocacy than any other in the Chiari community. Volunteering amongst these ambassadors has been the most rewarding thing I have done to date. I couldn’t have chosen a better organization to dedicate my time to - one I know that is impacting my children’s fight each day. I’ve made incredible friends along the way, which I am forever grateful for. Obtaining a support network of friends when the disorder is blind can be near impossible if they haven’t seen what you have from the inside out.
When your child has a chronic, debilitating disorder, you feel helpless. Looking for how to help, I researched all of the Chiari nonprofits that are currently in existence. I looked into what they provide to the Chiari community as a whole. Where did the funding go? Was it made public? What boards exist and who are a part of them? What specialists back the foundation?
I looked into what they provide educationally and resource driven, for both those new to Chiari, and those who’s lives are affected daily. What events and fundraisers are held to allow you to be part of a supportive community? What ways do they incorporate volunteer advocating? Are they in touch with our lawmakers to acquire funding needed for research and education? What is their outlook and support of clinical trials?
This was the only foundation that met everything I was looking for and more. I’ve not only learned an extraordinary amount by attending unite events, but from attending educational lectures and watching the events I cannot attend.
I’m so grateful for all they’ve done and continue to do. They have my support 100%
If you, or someone you love has Chiari or a comorbidity of the disorder, this is the foundation you need. Be it volunteering your time, monetarily, or simply utilizing their resources.
This year I had the pleasure of being the walk chairperson for Charleston, SC. It was our first walk and we had a great turnout! We raised about $5,000 for the Bobby Jones Chiari and Syringomyelia Foundation. Through the events and lectures presented by the foundation I have been able to share my knowledge, be a patient speaker, learn from other patients, and find my zebra family. These are lessons and friendships that will last a lifetime and I love being able to work with these wonderful people!
I was diagnosed in 2015 with Chiari and in 2017 I had decompression I made a promise that no matter what life throws at me I will dedicate everything I have in me to spread awareness!!!!! October 5, 2019 was my third Chiari walk. I'm so proud of my self and those who have committed to raise awareness!!!!!
The love and support our family has received from everyone at the Bobby Jones Chiari & Syringomyelia Foundation is AMAZING! It is wonderful to have built lifelong friendships with other families living with these disorders.
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I was hesitant signing up for my first unite@night walk with the Chiari & Syringomyelia Foundation, but it didn't take long for that hesitation to disappear. As the mother of three young children, one of which has a diagnosis of Chiari malformation and syringomyelia, and working full time plus I was concerned that I would be unable to have a successful fundraiser. It took one email from Cathy at CSF for that concern to transform in to confidence! Cathy and the team at CSF were amazing!! They took care of all the technical things that concerned me, getting the place and date and time all approved and permit applications and fees taken care of, even sending extra emails to follow up when we hadn't heard anything and then letting me know everything was all set to go. Not to mention the text messages, Facebook messages, phone calls, voice mails making sure that I felt confident and comfortable with everything for the day of my event!! I wouldn't even consider doing an event with another organization for fear that I would not have such a fantastic experience. The team at CSF is top notch!!
The Chiari and Syringomyelia Foundation was and continues to be an invaluable source of information and resources to me, as a mom of a child that was diagnosed with Chiari Malformation.
My son had developed symptoms and complications associated with complex Chiari, and facing a diagnosis and need for urgent surgery, I was desperate for information, references to research, and referrals to physicians. CSF provided all of that, presented in a way that was accessible to families and laypeople outside of the neuroscience field. I’m a scientist and so I also appreciated the references to the current research and the candid and compassionate communications (written, videos from seminars) and references to CSF sponsored projects (genetics studies).
It turned out the surgeon who ultimately was my son’s surgeon (Dr. Iskandar, U of Wisconsin) is on CSF’s advisory board. This connection and engagement of Dr. Iskandar with this quality organization helped increase my confidence in the care we were to receive.
My son is doing wonderfully. I’m so grateful for CSF for the work they do and the variety of impact they have funding research, communications, and connecting families with different resources. I highly recommend this organization for recognition and support. These conditions need more awareness and funding for families and patients to enable them to be as informed as possible and ultimately thrive. Thank you.
I recommend CSF for information. I believe in them so much, that I have become a volunteer to host an annual walk. They strive to bring awareness and research to al communities.
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In 2009 my son was diagnosed with Chiari. CSF was one of my go to sites to get information. We host a walk every year for them. I highly recommend working with this group. They are quick to respond to questions.
After my daughters diagnosis in 2012 of Chiari, Syringomyelia and a pituitary tumor I was desperate to lear more so I could help her find the best care possible. After talking with them we decide to host a CSF Unite at Night Walk...working with Cathy Poznick was great and her passion to find a cure is evident in all she and the others do that make up the team of professionals at CSF. I have referred many newly diagnosed individuals to their site and they were well informed and grateful!
CSF has been a great resource for me as. a patient and is a pleasure to work with as an organization.
When my daughter was diagnosed with Chiari and syringomyelia 4 years ago I was totally overwhelmed and was desperate to find information to help me to better understand the condition. I very fortunately stumbled upon the CSF website which has proven to be an incredible resource. The physician education videos are a wealth of information. They do a great job of staying relevant and current and are continually providing new information. As a parent trying to make difficult decisions for my child's treatment I feel that the resources available have allowed me to better understand the condition and therefore ask better questions when meeting with her medical team. By generating research for further advancement and tirelessly working towards educating the medical community on this condition they are doing a fantastic job of helping patients and their families navigate this challenging diagnosis.
CSF has been around for a while now and are helping other group learn to lead as well.
True dedication for the Chiari community.
A fantastic organization with caring staff who go above and beyond in support of those with Chiari & Syringomyelia.
Life changing! I thought my family and I were alone, and I’ve never been surrounded by so many intelligent, warm, understanding people who are so extremely comforting and dedicated towards fighting Chiari and Syringomyelia for good! We are not alone!
Working with the CSF team day in and day out and volunteering for the group from its inception, it is clear that this group truly cares and is so passionately invested in their mission. This makes for an incredible working environment, personally.
I was initially dx'd with Chiari 1, and decompressed as such. However, I actually had an Acquired Chiari 1.5, secondary to Intracranial Hypertension. Because I was decompressed and the pressure was allowed to remain from above, I developed a dural leak (pseudomeningocele) and a significant brain slump. Two years later, the unaddressed psuedomeningocele escalated, and I had a Subgalealperitoneal (SP) shunt put in to deescalate it. After years of revisions, an even larger brain slump, the development of an 11mm syrinx in my medulla oblongata (syringobulbia) draining down my cervical spine (syringomyelia), I will eventually be needing my shunt replaced with a Ventriculoatrial (VA) shunt and all the revisions that will come with that, especially as an Ehlers-Danlos patient. I also have a tethered cord that has yet to be addressed, but I'm surviving and still trying my best to thrive.
What I LOVE about the Chiari & Syringomyelia Foundation (CSF) is all the amazing videos that they put out. They support research, but they keep awareness as a key factor. There really is so much known about Chiari and its comorbid conditions, the doctors now need to know. The videos that they release year round, enable us to share what the doctors know, and help us make others aware of all we "really" go through. They trust us to support their efforts through walks, which serve an additional purpose of getting us out of the house and actually having face-to-face encounters with other Chiarians. I will forever be grateful to CSF (and Cathy) for all the hard work they put into building a sense of community, in our community. I encourage everyone reading this, whether they have Chiari or love someone who does, get to a Unite@Night walk in your area. If there are none, start one. You'll never regret it, nor will those that join you, as they have that opportunity of community and hope offered through Unite@Night walks!
I have organized a unite@night walk for the past 4 years. I've attended the past two unite@thehill events. I have attended countless educational events and I am so very happy to be associated with them. CSF made a difference in my life!!!
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CSF has made a HUGE difference in my life!! I had been diagnosed with Chiari just 2 months prior to the very first educational event in Washington DC. When I learned of the event I registered to attend. That night I met people who remain a part of my life, including the neurosurgeon who performed my decompression surgery. The group and the people who attend CSF events, are my lifelines during hard times. The research is above and beyond and I'm thankful for the advancements I've seen. Thank you CSF for ALL you do!!!!
My daughter has chiari. When we first found out this is one of the foundations that I was told to look into. I’m so glad I did.
The CSF organization has been a saving grace for me. As a person with chiari, they have provided support in the areas of education by sponsoring lectures, meet n greet medical professionals, informative info on social media, a supportive community, sponsored local events & even helped with finding the right specialists & doctors. The CSF staff is friendly & have a big heart for helping those struggling for answers. Thank you.
I was a young mother of 3 boys far away from family. My husband and I were walking to our sons first football game when I went down, my legs had NOTHING and stayed that way for 3 days. Went through decompression, twice. I was so alone as nobody had ever heard of it.
I found csf, they have made such a difference. Working together to bring awareness to this monster. Thank you for taking the time to read my story.
Having a child with what seems like a very rare malformation is terrifying! Being misdiagnosed for over a decade because doctors, family and the general population have no idea what to look for, or how to test for it, or even what the symptoms are....is infuriating. But how will people know? How will doctors learn and our knowledge and understanding grow if not for organisations like this one getting the word out! The Chiari and Syringomyelia Foundation have featured so many of the 'experts' in this field, and there aren't many. What they are doing for this disease is fantastic, This information needs to be out there, and it needs to be available to the general public. Patients and mothers and caregivers need to be armed with useful and reliable medical knowledge so that they can help doctors diagnose and treat a disorder that is much, much more common than we understand. This is a problem that can be solved, maybe not prevented? But either way, this knowledge is power and it's so very important to me and hundreds of thousands of others.
As a patient who has Chiari I have been ignored, lied to, and ignored by this organization. The organization doesn't see any issue with spreading incorrect info regarding Chiari.
I was born with a tethered spinal cord and developed syringomyelia from it not being properly diagnosed. Two of my children have Chiari Malformation and we all have hypermobile Ehlers Danlos Syndrome. It took four and a half years for me to get the right diagnosis. After which I felt empowered to finally start treating my illnesses. That was quickly followed by hopelessness and despair as all of my doctors told me they knew nothing about any of it. The CSF has an amazing board of advisors, physicians recognized around the world, listed on their site. I first contacted Dr. Fraser Henderson, who reassured me, I was not an anomaly to him. He has since done three surgeries on my neck. Dr. Petra Klinge, also on the board, has performed Spinal cord surgery on me and is going to now start seeing my children. Without the CSF, the information and resources they provide, I don't know where I'd be. Those doctors saved my life. As I learned more about my illnesses, my desire to raise awareness has become a calling. Now, with the help of the CSF, I hope to bring awareness and education to the doctors in the Hampton Roads area of Virginia. This is only the second year our area has held a unite@night walk, and those of us chairing the walk feel the CSF provides such a tremendous service to people with Chiari and Syringomyelia, that we want to give back to the organization year after year so they can continue to serve their mission.
Four years ago, when my grandson was diagnosed with Chiari Malformation, my first call was to Dorothy Poppe. I cried and told her about my grandson's diagnosis. Dorothy was extremely compassionate and helpful on that day and in the months that followed. She has always answered every question and continues to do so to this day. Her first hand knowledge of chiari both as a mother and a professional has been an important resource to me and my family. We continue to support CSF and all it's programs.
I am so grateful this organization exist. I was diagnosis with Chari and Syringomyelia and had no knowledge of what this was or what I should do. I did a Google search and found this organization, CSF. Just so happen CSF was sponsoring a seminar in my area that same day. I rushed to register and make it to that session. I was welcomed with open arms and received a welt of information. I even met what I have learned is the best doctor in the world for my condition. Now, I am confident I received the best treatment possible. CSF is still working hard to get this knowledge to others and help those in need. CSF is doing a great service and I am so thankful.
Chiari & Syringomyelia and I have been working together for a number of years, sharing a goal of promoting awareness and educating the public and medical community about Chiari and syringomyelia. I am one of many people whose lives have been profoundly affected by Chiari.
I was forced to retire early and go on disability, a bitter pill to swallow. Every aspect of my life was affected by pain and mobility problems. Previously I was active as a volunteer in my community and profession. I reduced my many activities to two, my church and Chiari advocacy.
CSF gives me the ability to still use my leadership skills, while providing programs and support that reduces my fatigue and gives me emotional support when things get overwhelming. Their staff members are also physically there for us when needed. I remember being in Washington D.C. and becoming disorientated to the point I could not do my presentation when we reached the legislators office, the CSF representative stepped in, found a comfortable position for me, asked for cold water for me and explained that she would speak while I recovered. None of the legislative aides that we spoke to that day had ever heard of Chiari or syringomyelia. That is too often the case, which is why CSF and I are fully committed to spreading awareness. Unfortunately many n the medical community were not well educated in Chiari and syringomyelia, resulting in misdiagnosis and delayed treatment for many people including myself. My symptoms of excruciating pain, balance problems, trouble focusing, bladder and swallowing problems started in 1995. I have been misdiagnosed five times.
CSF helps people to easily understand the conditions. Support groups, national fund raising walks, regional conferences, online videos and so much more are provided. One of the advantages of CSF is the ease of using provided programs and materials.
I hope to be working with CSF long into my future and encouraging others to join forces with us.
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CSF has provided high quality, relative and timely educational programs. The programs are made live on social media to reach members everywhere. The CSF Unite @ Nite Walks have raised awareness about CHiari, a relatively rare neurological disorder and all the associated disorders, across the USA. CSF provides a great guide so that members who are suffering symptoms of CHiari and want to chair a walk or event can do so with the least stress possible. Walk supplies are mailed to chairs and advice is always available online or by phone. CSF strives to work with other organizations doing joint programs. Research is ongoing.
The CSF organization was there for my family & me when I was first diagnosed & suffering from Chiari symptoms following a car accident. The team there helped us with resources, they introduced us to great medical doctors & we were educated through their sponsored lectures throughout the country. I am forever grateful for all their hard work, support & love for the hurting. We may look good on the outside, but we are hurting on the inside. Thank you & God bless.
JC
CSF is such a professional organization! They provide outstanding information about these terrible disorders (Chiari Malformation and Syringomyelia) and they are leaders in funding the research needed to find a cure!
I'm not personally affected by these disorders but I've volunteered with CSF for many years now. I've met some of the most amazing people in the process. Even the kids and families who are really struggling always seem to have this amazing drive to get through it all. To be able to see them swell with happiness when they make a valuable personal connection at a lecture, unite@night walk, or any other event always makes me tear up a little. Seeing the look on someone's face or hearing the tone in someone's voice that says "you understand what I'm going through and I appreciate that" makes it all worth it. I'm grateful that CSF and the other dedicated volunteers who tirelessly work to make it all happen can make a difference for so many people.
How blessed I felt when I found Chiari & Syringomyelia Foundation ! I knew right off that I wanted to be a part of this organization. I was diagnosed with Chiari in 1999 and was told that it would never affect me and then was diagnosed with Syringomyelia in 2010 but told again that this isn't going to affect me either. Following this I was diagnosed with Tethered Cord Syndrome and Diastematomyelia. 2012 was the beginning. Many surgeries followed to try to control this body of mine. I felt that while I was trying to educate myself it was just as important to help some of the other medical staffs that I will forever be connected with to keep me as strong as I can be. It hasn't been easy and at times I wondered how much I was being heard. As time passed I know people realized that seeing my MRI scans and explain things certain things made since. I know with me they have to step out of the box that they have done before and realize that even doctors get baffled as well as the patients themselves. CSF goals are to raise money and awareness to the medical field and to the lay to get a better understanding of these debilitating disorders!
Growing up in a small town, my family became very close with the other residents of the town. One of the families learned about Chiari after the oldest son was diagnosed. By the time he had graduated high school he had spent more time in the OR than he did at school. Because of Chiari he was not allowed to play soccer, a sport which was a big part of his life, and he was not able to have a normal childhood because of the constant pain and frequent trips to Chicago for surgeries and doctors visits because it was the only hospital that had extensive knowledge of the disorder. This family started to grow awareness in our small town and I wanted to be a part of it because no child and no person should have to live through what this family had to go through. I have brought my passion for CSF from Cleveland, Ohio to Columbus, Ohio and will take it with me wherever I go because the more places I travel, the more people I meet who have had life altering conditions within CSF the more I want to find a cure so that every person will not have to put their life on hold for a disease.
CSF has been an invaluable resource to me and it is a marvelous organization! They are at the forefront of educating, researching and bringing about awareness of Chiari, syringomyelia as well as related conditions. Having several comorbid conditions and finding them so poorly understood in the medical community, the physician lectures that are available online have helped me to understand them better and become my own best advocate. I refer others often to CSF's site to learn more - patients, caregivers and medical professionals. Funding is critical to keep CSF moving forward with the important work they do. I am honored to be involved as a unite@night walk chairperson for the past 3 years as well as becoming the local chapter representative in my area.
They helped me learn more about my condition in order to advocate for myself. They put their heart and soul into their work, and that made me decide to join them on their mission.
When I was first diagnosed with Chiari, I sought out sources of reliable information. Although I didn't come across CSF immediately I found them eventually. Their emphasis on education of the public and especially the medical field has always been encouraging. Their professionalism and focus on raising awareness is in large part why I have become an active part of the organization through hosting a loca awareness walk. I know that the money I raise is being placed into competent and caring hands. And I am confident that the people I send their way will find help as they journey through their own diagnosis of Chiari, Syringomyelia or a related disorder.
I appreciate that CSF is very transparent and has received the Platinum level of Guidestar, meets the 20 standards of the BBB, and had met the HONCode certification. This is important to me as a donor and a parent of kids with these disorders.
This is a wonderful organization! The resources, information and education are easily available and every person I have had contract with has been very professional and helpful. I refer others to the web site often and will continue to do so!
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CSF is a wonderful source of information about Chiari Malformation, Syringomyelia and related disorders. This was my first year as a chairperson for the unite@night walk in my area and I could not have done it without all the help and support of the awesome people at CSF. The lectures and information videos available online are very informative and inspiring. This is a wonderful organization!
I lived 17 years w/ Chiari Malformation before finding CSF. It brought tears to my eyes to hear people talk about their experience, their symptoms, and their lifestyle with this disease. For the first time since my diagnosis, I realized I found 'my people'. That day I picked up the phone and found out how I could become involved. I conducted my first walk, in June and heard parents, kids, and adults alike share that this was the most positive non-profit walk they've ever been apart of. I love this organization and can't wait to watch it flourish.
I was told when I diagnosed with Chiari, as a senior citizen, that it was "a brain" thing. Added to the fact that it was frightening and I had never heard of it was all the negative comments on the internet in support groups. It wasn't a matter of "if I was going to die; it was a matter of when". As scary as it was, it was a relief to finally have a diagnosis. I had spent a good part of my life going from doctor to doctor and being told I had an ear infection, being given pain pills for the headaches, and having symptoms treated individually without a diagnosis. The symptoms of chiari and its related disorders are many and life changing. I became very frustrated but because I "didn't look sick" I wasn't taken seriously and it was even hinted at that I might be pretending. I would be sent home with an antibiotic or another different color pill. Even though I had multiple MRIs over the years and the right words and pictures were there (I know that now looking back), no one looked at them who was familiar with chiari and could make the proper diagnosis. It's disheartening to realize that with awareness within the medical community itself, I could have been diagnosed about 20 years ago. After my diagnosis in 2007, I was told that my chiari and basilar invagination was too risky to do surgery. I was told I was a ticking time bomb at the time. Then I got lucky, found the right nureosurgeon, had the surgery and was introduced to Dorothy Poppe and the wonderful work of the Chiari & Syringomyelia Foundation. Through them and the contacts I've made as a result of their educational, awareness, and outreach work, I have learned so much about how to deal with chiari. If I can't make the live lectures, I can watch them on line. Their help and assistance is invaluable to so many people as their effort to find a cause and a cure for these devastating illness continues. Thank you for your support of this organization that provides so much to the patients, especially through research, education, and awareness. In the last couple of years, I have actually been a patient at facilities where I no longer have to explain what chiari is to the medical team before they treat me. What a relief! When I first starting doing fundraisers for the CSF for the unite@night walk, no one I came in contact with had heard of chiari; I have seen that change over the last four or five years...........their awareness program and efforts are working.......so much so that more and more people who a meet actually know about chiari. The unite!night walk which is sponsored by the CSF is such a valuable venue for spreading the word. A teenager who was a clerk at one of the stores where I was holding a fundraiser stopped by our table last year and we talked about chiari. A year later I ran into her while shopping and she told me that she had diagnosed with chiari after she experienced the symptoms which she now knew about and could ask the doctor to test her for. Without the efforts of this much needed organization, she very well may have gone the route I did wandering from doctor to doctor without a diagnosis, not looking sick but knowing that something was terribly wrong and suffering from the daily symptoms of chiari. I thank CSF for all they do to hunt for the cause and a cure!. They are always professional, dedicated, and passionate about what they do.........a great organization!
The Chiari & Syringomyelia Foundation is a great organization to work with as a volunteer and fundraiser and as a beneficiary of their work. I have been participating in their unite@night walks for the last four years and have seen the incredible work that they do to bring awareness to communities about these conditions that are not well known to most people, not even the medical community. For the last two years I have helped organize the walk in my city, along with helping to organize multiple lectures by prominent neurosurgeons to help educate patients, medical staff and the community. The funds raised by CSF (primarily through the walks) goes largely to education and is invaluable to helping to raise awareness throughout the medical community and improving care for patients across the country. As a person with Chiari Malformation myself, I cannot stress how much I value the work that CSF does every day and am proud to be a part of their organization.
They really care about people. This organization has raised so much awareness for these conditions. They are making leap and bounds to make sure our voice is heard.
I have gone to 2 unite at nite walks and decided to be a chair person this year! I have watched several of the videos from neurosurgeon and such! I love the awareness they raise! I knew nothing about Chiari until 2012 when I was diagnosed. We need to raise awareness for Chiari and related conditions. CSF is dedicated to do just that! I'm impressed with everything about there site! Thank you.
I have done a walk for CSF for 4years. They are awesome to spread awareness for Chiari Malformation and other related disorders. Cathy is great to talk too and really understands the pain a mom goes through. Nothing is worse the seeing your child in pain and it is always great to reach out to someone who understands.
They are doing so much good in the community, educating doctors and inching their way to helping define Chiat. This is huge!
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While dealing with an increase in symptoms for syringomyelia went looking for current information and found CSF. I have been impressed with their organization! When you have a rare disease it is hard to find up to date information. In most cases it is hard to find or understand for many patients. Their site has many useful videos and written explanations for those newly diagnosed or like I was seeking current information. Wish something like CSF was around 37 years ago when I was diagnosed! My hope is to become more invovled with this organization to help pave the way for a cure and better diagnosis for future generations. Information Awareness Education three important principles supported by this amazing organization. #SmashSM
I first became acquainted with the CSF at a quarterly educational meeting and lecture that was held in Maryland. As a patient and sufferer of Chiari Malformation , I am so thankful for all the CSF is doing to raise awareness and education for these diseases. This is a truly great organization, and I know they will continue to do great things!
I am only 14 but I was diagnosed with Chiari Malformation and Syringomyelia July 2013! I had no idea of both of these conditions or that they even existed! I then had surgery for chiari and syringomyelia on 14 October 2013. As an adolescent growing up with friends that were all perfectly healthy it can be tough. I thought I was alone in the world. I am very inquisitive so I tried to look at other people stories and their understanding of how to cope with this. When I came across the Chiari and Syringomyelia Foundation (CSF ) I was beyond delighted they do great work to help find a cure for this agonizing painful condition. I really wish there were more foundations like this for Chiari and Syringomyelia as no one will fully understand how it is living with this. Some days can be better than others but sometimes you can loose the mental stability to live! This foundation should be fully credited they raise money for a condition most people would turn a blind eye to as they can't see the suffering from the outside! I live in the Northern Ireland that's how far this foundation has made an impact and one day I hope to attend a walk with this foundation!
I was diagnosed with an incurable disorder at the age of 34. The word "Chiari" entered my world and changed my life. I went from an active, teacher mom of 2 young children to a parent who struggled to stand on her own two feet. I discovered the Chiari & Syringomyelia Foundation as I researched my condition. To my delight, I found information, advocates--and new friends. I wasn't battling alone, I had a team beside me. To say that CSF has changed my life, would be to state it lightly. I have gratefully been healing from brain surgery to help with my symptoms and this allowed me to host two *unite@night* walks in my home state. Those walks brought awareness, education and research dollars to CSF--more importantly, they allowed those suffering from Chiari and its related disorders to gather together. To share our laughter and tears is the most wonderful gift. I happily volunteer as a way to give back to an organization that has given me so much. Together, we can find a cure!!!
I began working with CSF two years ago as a Steering Committee member of the Bobby Jones Classic for CSF at Bobby Jones' home course, East Lake Golf Club, just outside of Atlanta, Ga. We are now in our third year of the Bobby Jones Classic for CSF and I am more impressed each year with the foundations personal attention and determination to find a cure for Chiari and Syringomyelia.
I was recently asked to join the board and subsequently was nominated as the foundations Treasurer. Working with this group gives me hope and confidence that there is a cure for these disorders and we will soon be able to relieve the pain and suffering caused by Chiari and Syringomyelia.
As a Board member, I have had the privilege of working with the staff and other volunteers within CSF. The organization is so focused on finding a cure for chiari and syringomyelia that I believe it will become a reality! It is a blessing to be a part of such a wonderful community of people who strive each day to make difference in this endeavor.
My Name is Joyellen Sanders. My husband and I were a coordinator for a walk this year. This organization was always there to help us and others like us. They were very informative and made everything easy. Friends and Family have told us how much they loved the walk and how much they loved the things that CSF had available for us at the walk. There were informative signs about our condition and related. Registration was easy. Even after the walk, CSF has continued to stay in touch to make it better for all.
My name is John Wojtila from Euclid Ohio. I've attended many functions over the past years sponsored by this Foundation and they have all been educational, informative and help bring awareness to these conditions. I have supported this group and will continue to do so as they work to sponsor research necessary for the future to combat these conditions. The Foundation is professionally managed and organized with a clear focus on its Mission. The goals of this Foundation are crucial, important and noble. Congratulations Chiari & Syringomyelia Foundation.
I have been associated with CSF, Inc. since its inception. The dedication and hard work of the administrative staff, Executive Director, and Board members are among the finest group of individuals I have had the privilege of working with throughout a long professional career.
My name is Jade & I am from Melbourne, Australia.
& although this is an American organization, it really does help everybody.
I suffer from both Chiari malformation type 1 & syringomyalia.
I was diagnosed at age 3 & had my first surgery at age 4.
We need awareness, globally. I can't tell you how much it would mean to every chiarian, family member & or friend of a sufferer, to have this as global knowledge.
You have my support & support from many within 'my' Australian support group (on Facebook)
Our members often use the 'Chiari & Syringomyalia foundation's site to gain additional knowledge & to know we are not so alone.
Thank you.
I have Arnold Chiari Malformation which is a rare brain disorder that is congenital. It is being diagnosed more and more as information such as provided by this organization is being better known by physicians and the public. I live in a small town and two people in my town and a small child in a nearby town have been diagnosed since I have 8 years ago.
My son Reid, age 6, was diagnosed with a Chiari Malformation a little over a year ago. It was a very confusing & difficult time & finding the proper information about this disorder is difficult. We had trouble finding doctors with experience treating children with Chiari & giving us correct advise. CSF was a great source of information & help in leading us to the right doctor for our son. So much more research & education needs to be done & they are committed to both. Thankful & blessed to have them.
I have a Chiari-malformation. It is not well known so to find a Dr. that has even heard of it is rare. It is congenital. I have 3 children and they have a high risk of having it also. It effects the quality of life everyday more and more. I want better for my children. This foundation is helping so much to help awareness and improve life of a chiarian.
I have a set of rare brain and spinal diseases called Chiari malformation and Syringomyelia. I have to struggle to find doctors who even know what these rare neurological disorders are. This charity raises funding for research needed to find a cure for people like me.
I have been a long time friend of a family with Chiari. I understand enough about the disease to know what struggles go along Chiari and Syringomyelia Malformation. It's been wonderful attending the benefits held in Twinsburg for this wonderful cause. So many people are helping to make awareness happen. There are so many people that don't know what Chiari is. The Chapter her in Twinsburg is run by Cathy Poznik, who has 2 sons diagnosed with Chiari and Syringomyelia Malformation. She is a very motivated person that has helped spread awareness through her efforts in walks, benefits, etc. I'm glad I've been a part of this cause. More people need to help bring a cure to this debilitating disease.
As a supporter and advisor to CSF, I am delighted to share my impressions and recommendations. The organization is directed by a highly committed group of compassionate professionals. The directors have for years fought for recognition of the disorders of Chiari & syringomyelia, conditions that diminish the quality of life, sometimes severely. Many sufferers are undiagnosed and frequently discounted by the healthcare system and loose faith. Returning this faith and pushing for better treatment and hopefully a cure is the organizations mission. Simply, it is my honor to be associated with such a team. Their work can be seen in the smiles and the comforting exhalation of breath often seen when they know they are surrounded by those that understand and can help and guide.
I learned of Chiari Malformation, syringomyelia when a friend of my son's was diagnosed in grade school. Since then, this young boy who has now grown into a young man has had to endure countless life threatening surgeries and still goes through daily pain that goes along with these conditions making it very difficult to lead a normal life. I had never heard of Chiari Malformation, syringomylelia before this, and yet not only was a brother of this young boy also diagnosed with the same condition, but I now know of several others in and around our community and across our nation that also suffer and live from one day to the next not knowing what they will be able to do each day.
The Cleveland Chapter of the Chiari & Syringomyelia Foundation, Inc. (CSF) has done a great job in bringing awareness to this disorder and working to advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related CSF (cerebrospinal fluid) disorders. The work of CSF is supported by tax-deductible contributions made by individuals, companies, and organizations.
I am pleased to help out in anyway I can to help benefit the over one million families who struggle daily with the devastating effects of Chiari malformation, syringomyelia and related disorders. I am just one person though and can only do so much. They need more support.
Sincerely,
Darilyn Simon
I don't know what I would have done without being able to pick up the phone and call the wonderful ladies of CSF. From the time my daughter Cara was diagnosed at age 9 through her surgery at age 10, I was able to call with questions, concerns, direction and emotional support. I could never thank them enough for their loving help.
CSF has been a fantastic organization for myself to learn more about my daughter's diagnosis of Chiari Malformation. They often hold seminars with experts in the fields of neurosurgery, neurology, genetics, physical therapy, radiology, and many more fields that related to Chiari and Syringomyelia. They record those lectures, then place them online for anyone in the world to see and learn. They have been tremendously helpful. They have also guided me in setting up a local co-op for other families in our area to connect with each other. We also helped lead a CSF unite@ night walk for our local community to raise funds for research. I recommend for everyone that I'm explaining Chiari to to check out CSF website to learn more!
CSF has been incredibly helpful to myself and my family as we faced my daughter's diagnosis of Chiari and Syringomyelia in early 2012. They have wonderful resources with all the information you could possibly ask for regarding both and much more! My daughter and I have both attended several of the free seminars which have been incredibly insightful and it helps my daughter to know she is far from alone! This was our first year participating by starting our own Charter in Clyde, Ohio and having our CSF Unite@night walk and it was overwhelming the community support and to find so many other people in our surrounding area effected with this. CSF and the volunteers go above and beyond to spread awareness, help out in any way possible. It is an amazing relief to already worried parents to have CSF , all their information, compassion and caring people who will do whatever they can to share any and all info they have. Thank God for CSF and all it's many volunteers!
Review from Guidestar