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The Karen Schmidt ACMCRN Memorial Fund Welcome to the Karen Schmidt Memorial Fund page. Although Karen was new to the Arachnoiditis Community, she was loved by many and will be missed by the entire Arachnoiditis Community. This page is dedicated to her memory. For those of you who did not know, Karen was diagnosed with a very painful inflammatory spinal cord disease called Arachnoiditis. Although not all cases of Arachnoiditis progress to the catastrophic stage, Karen's did. She had catastrophic Adhesive Arachnoiditis (AA) with ossifications. The pain from this type of severity has been compared to stage 4 terminal bone cancer. Karen ultimately gave into the pain from her very painful AA. Karen's family has asked that you donate to her ACMCRN memorial fund. ACMCRN is a nonprofit for Arachnoiditis. We are dedicated to bringing an end to the suffering of Arachnoiditis patients through education, awareness, and research. ACMCRN is entirely ran by volunteers and 100% of the donations go towards achieving our mission. Please click on the yellow button below to donate in Karen Schmidt's name and be sure to sign the guestbook Holiday Cheer with Arachnoiditis: Navigating the Glitter and Gravy in a Fragile Body Ehlers-Danlos Syndrome (EDS) and Chronic Regional Pain Syndrome and Arachnoiditis Breathing method for stress and pain Educational Articles

< Back Stana Bojanic Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Daniel Refai Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Thomas Kline Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back M. Hulens Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Youssef Josephson Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Brett Whatcott Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Caitlin Innerfield Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Kiran Chekka Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

Important Announcement: Closure of Luna Platform, Host of Our Arachnoiditis Patient Registry ​ Urgent Notice to All ACMCRN Members ​ We are reaching out with a crucial update that impacts our Arachnoiditis Patient Registry. We have been informed that Luna, the digital platform hosting our registry, is closing down. ​ Details of the Closure: Luna has initiated the shutdown process due to financial constraints and is set to delete all user accounts and data by January 31, 2024. This significant development directly affects our registry and the valuable data you have entrusted to us. ​ What This Means for Our Registry Members: ​ Action Needed to Export Your Data: If you have personal data on Luna that you wish to retain, we recommend exporting it before the January 31 deadline. Luna has provided guidelines on how to do this. Security of Your Registry Data: Rest assured, the data within the Arachnoiditis Patient Registry is secure. Under the PEER organization's guidance, we are in the process of transitioning to a new platform to ensure the continued safety and confidentiality of your information. ​ ​ Stay Informed Through Our Newsletter: For the latest updates on the transition and notification of our new registry platform, we urge you to subscribe to our Registry Newsletter. This will be the most direct way to receive timely and important information. Continued Support and Communication: ​ Regular Updates: We are committed to keeping you informed through our website, emails, and the Registry Newsletter. Data Security Commitment: Ensuring the protection of your data remains our highest priority during this transition. Questions and Support: For any inquiries, please reach out to Lori Verton, President, at verton@acmcrn.org . Our Dedication Amidst Change While the closure of Luna presents challenges, our commitment to our community and the Arachnoiditis Patient Registry remains steadfast. We are dedicated to managing this transition smoothly and with minimal disruption to our services. ​ Thank you for your understanding and continued support during this transitional phase and don't forget to subscribe to our newsletter to be notified about the Patient Registry and other important updates. Subscribe Registry Login Resources Important Note Regarding Our Patient Registry Instructional Video ​ As we navigate through the transition to a new platform for our Arachnoiditis Patient Registry, we would like to inform our members that we will continue to host the existing instructional video on our website. This decision has been made recognizing the value this video offers in explaining the general workings and benefits of a patient registry. ​ Why We Are Keeping the Old Video: ​ Educational Value: The current video contains essential information that is beneficial for both new and existing members to understand how a registry functions and the importance of their participation. Timeless Insights: Despite the upcoming platform change, the principles and objectives outlined in the video remain relevant and provide a solid foundation for understanding the purpose and impact of our registry. ​ We believe this video will continue to serve as a valuable resource in educating and engaging our community. Once the new platform is established and operational, we plan to supplement this existing material with updated content that reflects any new features or processes. We encourage all members, especially those new to the Arachnoiditis Patient Registry, to view this video to gain a deeper understanding of how patient registries play a crucial role in research and advocacy. ​ Thank you for your ongoing support and engagement with our efforts to advance understanding and treatment of Arachnoiditis. Intro to Registries ​ Overview of clinical trials and the process. Different study phases, meanings and timelines. Safeguards in place when participating in a clinical trial. General Clinical Research Overview ​ How new treatments are developed under specific requirements and different study designs. Regulatory oversight and guidelines are in place for the conduct of safe and ethical clinical trials. How clinical trials are adapting to make them more accessible for participants. Basics of Clinical Trials Understanding Clinical Trials - Clinical Research Resources from CISCRP 2023 POSTER ABSTRACT This poster abstract is the result of a significant achievement involving 1250 survey respondents who willingly shared their medical histories and engaged in a ACMCRN survey through StuffThatWorks. This abstract, created in collaboration with Dr. Patricia Gomez Lorens and Lori Verton, encapsulates the insights gained from this extensive survey. It is designed as a research tool, akin to posters presented at conferences, and is ready for dissemination at various rare disease conferences and research symposiums. The survey's findings shed light on the demographics of the respondents, highlighting a majority of females primarily from the US, aged between 45 and 65, with over 78% indicating symptom onset in adulthood or early adulthood. Notably, the survey uncovered a distinct correlation with difficulty sitting, suggesting its potential as a unique marker for Arachnoiditis diagnosis. This promising correlation encourages further exploration and validation within the field. The poster abstract has been submitted to the Cambridge UK Raresummit23 and another conference in Brussels, Belgium, with hopes to present it at other important medical conferences in the future. This broader exposure increases the chances that researchers will be willing to delve into Arachnoiditis research, benefiting the community. Click on image to download the .pdf file for this graphic

< Back Sara Bomar Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

DISCLAIMER ACMCRN acknowledges how hard it is to find an Arachnoiditis friendly specialist across various disciplines globally, so to further our commitment to your access to management and care we have created this list that is populated by Arachnoiditis patients who have submitted their information to our site. It is important to note that ACMCRN does not have any ownership or direct financial interest in any of the specific doctors or clinics listed on our Arachnoiditis-friendly directory. There are no formal listing criteria, and ACMCRN does not endorse, recommend, or certify any of these physicians. If you think you have an emergency, call your doctor or emergency services immediately. ACMCRN does not guarantee or make any warranties, express or implied, as to the quality of medical advice or care given by any listed physician. The information listed in the results are based solely upon the information given by Arachnoiditis patients.

< Back Dr. Brandon D Woods Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Brian Lefler Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Vivek Barclay Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

KNOW YOUR DISEASE ACMCRN on Arachnoiditis provides you with a variety of materials and resources to help support your journey with Arachnoiditis. Here you will find practical resources on where to start, basic information about Arachnoiditis, educating yourself and the medical community, treatment options you can try, resources from The Tennant Foundation, files you can download, and external links to websites about rare diseases and Arachnoiditis STARTING POINT If you’re newly diagnosed, suspect that you have Arachnoiditis, or are one of the many thousands who have been misdiagnosed. Here you will find the tools to get started on your treatment plan and to connect with others like you. LEARN MORE TREATMENT OPTIONS Learn about the most current and up-to-date treatment options for Arachnoiditis. You’ll find supplements, prescriptions, dietary advice, alternative methods, and holistic approaches for tackling Arachnoiditis. LEARN MORE DR. TENNANT MATERIALS Great resource from The Tennant Foundation. Dr. Tennant is one of the very few physicians currently studying Arachnoiditis and regularly releases informative bulletins; articles; books; and videos on Arachnoiditis. LEARN MORE EDUCATE YOURSELF Want to learn more about Arachnoiditis? This section includes how to treat neuroinflammation; regenerate tissue; and controlling pain that is based on the Three Component Protocol developed by Dr. Tennant. You will also find information on treating flare ups, what to do if you’re progressing, understanding your MRI, spinal fluid leaks and obstruction, and much more. LEARN MORE PROFESSIONAL TEACHING RESOURCES This section is for the Healthcare Professional with resources on educational materials, diagnosing Arachnoiditis, MRI imaging patterns, articles, and other resources for the medical professional. LEARN MORE FILE SECTION This section contains downloadable and printable articles, bulletins, chronicles, and many other resources for you and your physician. LEARN MORE

OUR MISSION ACMCRN leads the Arachnoiditis community in collaborative efforts in research, education, and advocacy. Our mission is to advance Arachnoiditis knowledge through collaborative research, patient education, and the establishment of the Arachnoiditis International Patient Registry. We are dedicated to uniting patients, caregivers, doctors, and researchers to work together as a single team, utilizing rare disease data sharing, online community engagement, and the latest research tools to advance our understanding and treatment options for Arachnoiditis and Chronic Meningitis. OUR VISION ACMCRN continues to lead the collaborative effort by bringing patients, caregivers, doctors, and researchers together as one cohesive team to advance research and education within the Arachnoiditis community. We aim to employ the latest rare disease research strategies, leverage patient-centered outcome research, and partner with global Arachnoiditis experts to further our understanding and uncover new treatment possibilities. Our recent accomplishment, the Arachnoiditis International Patient Registry, is a cornerstone of our vision, serving as the basis for clinical trials and peer-reviewed research. We achieve our mission by focusing on four strategic areas: Research: Our research utilizes the latest rare disease research strategies and collaborates with global Arachnoiditis experts to enhance our understanding of the condition and explore potential treatments. The Arachnoiditis International Patient Registry provides the necessary infrastructure for clinical trials and peer-reviewed research. Strategic Collaborations: We unite patients, their families, physicians, researchers, and industry partners through online forums, newsletters, Zoom peer support, and collaborations with rare disease organizations. We maintain partnerships with organizations representing conditions like Tarlov Cyst, CSFleak, and Ehlers-Danlos. Awareness & Fundraising: We prioritize awareness and education, aiming to shed light on the underdiagnosis of Arachnoiditis. Our educational materials cater to both patients and physicians. We collaborate with organizations such as The Tennant Foundation, Global Gene's Compassion Pairing Program, and others to support awareness and education projects. Patient Engagement: We maintain active social media channels to provide the latest updates on research and education. Our private and public Facebook groups, as well as Instagram, LinkedIn, and Twitter, encourage daily patient engagement. Our future goal includes creating a peer support channel through this website by the end of 2023. Our Partners We're in this together Working together to shape our world. ​ We believe that long-term, impactful partnerships are foremost in achieving our mission. Therefore, we work with and alongside others to shape the world for difference — We can’t do it alone. Partnering with others who share our mission and are on our journey will lead to even greater impact.

< Back David Dickerson Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Lee Irvin Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back W Edward Clymer Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Brian Kasel Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

Social Media Toolkit: Amplify Our Voice Welcome to the ACMCRN Social Media Toolkit, a powerful resource designed to unite voices and amplify our message across the globe. This toolkit is your gateway to making a significant impact on raising awareness for Arachnoiditis and other rare diseases. Whether you’re deeply involved in our community or looking to lend your voice to our cause, here you’ll find everything you need to share, educate, and inspire action through your social media platforms. ​ Why Use the Toolkit? Social media is a potent tool for change, capable of reaching thousands, if not millions, with a single post. By utilizing our pre-crafted messages and visuals, you can help us: Spread Awareness: Increase visibility for Arachnoiditis and rare diseases, educating your network on their impact. Drive Advocacy: Encourage others to join our cause, advocating for research, support, and solutions. Build Community: Connect with others who share your passion for making a difference in the rare disease community. What’s Inside? Our toolkit is meticulously organized to make your advocacy as effective and impactful as possible: R eady-to-Post Messages: Crafted with care, each message is designed to engage and inform, perfect for sharing across platforms like Facebook, Twitter, and Instagram. Engaging Graphics: Eye-catching images and infographics that visually convey the significance of our cause, ready to download and post. Hashtags for Impact: Strategic hashtags that increase the reach of your posts, connecting them with a global conversation. Tips for Sharing: Guidance on how to effectively share and discuss Arachnoiditis and rare diseases on social media, maximizing your impact. How to Get Started Explore: Browse through the toolkit to find messages and graphics that resonate with you. Copy & Paste: For text posts, simply copy the message and paste it into your social media. For images, download and upload them directly to your platform. Share & Tag: Don’t forget to use the recommended hashtags and tag our official account to join the wider conversation. ​ Social Media Graphics ​ Join the Awareness Movement: Share Your Support ​ Eager to create an impact? Our Social Media Toolkit is filled with stunning social media graphics designed to express your support and enhance awareness of Arachnoiditis and rare diseases. ​ How to Download Your Social Media Graphic: Select the photo gallery you would like to download images from. Select the graphic you wish to use by clicking on it. You'll be directed to a full-size version of the image. Find the Download Arrow on the page, typically located at the bottom or top corner. Click the Download Arrow to save the image directly to your device. Make It Visible: Upload the downloaded graphic to your social media accounts, transforming your profile into a beacon of support and awareness. Facebook Profile Photos Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Profile Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Load More Facebook Cover Photos Facebook Cover Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Cover Show your support for Arachnoiditis with our custom Facebook cover image. Download this image and update your Facebook cover picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Cover Show your support for Arachnoiditis with our custom profile image. Download this image and update your profile picture to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Post Graphics Facebook Post Show your support for Arachnoiditis with our custom Facebook Post image. Download this image and post in your social media to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Post Show your support for Arachnoiditis with our custom Facebook Post image. Download this image and post in your social media to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Post Show your support for Arachnoiditis with our custom Facebook Post image. Download this image and post in your social media to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Post Show your support for Arachnoiditis with our custom Facebook Post image. Download this image and post in your social media to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Post Show your support for Arachnoiditis with our custom Facebook Post image. Download this image and post in your social media to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Post Show your support for Arachnoiditis with our custom Facebook Post image. Download this image and post in your social media to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Post Show your support for Arachnoiditis with our custom Facebook Post image. Download this image and post in your social media to spread awareness and inspire others to join the cause. Together, we can make a difference. Facebook Post Show your support for Arachnoiditis with our custom Facebook Post image. Download this image and post in your social media to spread awareness and inspire others to join the cause. Together, we can make a difference. Load More Video Shorts Collection Dive into our carefully curated selection of video shorts, offering compelling insights and essential information about Arachnoiditis. Each piece is designed to inform, inspire, and ignite conversation. Whether you're seeking to understand more about this condition, looking for support, or wanting to share knowledge within your community, our videos provide a valuable resource. ​ For a deeper dive and to access downloadable versions, simply click on the link provided below each video. This will take you directly to our YouTube channel, where you can find additional content, join our community, and help spread awareness about Arachnoiditis. Share this video from our YouTube channel Share this video from our YouTube channel Share this video from our YouTube Channel Share this video from our YouTube channel READY-TO-POST MESSAGES In this section, we are excited to share with you some example posts that you can easily copy and paste into your preferred social media platforms. These posts can be accompanied by graphics and videos from this page. They have been carefully crafted to help you raise awareness and show your support for individuals affected by arachnoiditis. ​ Instructions: ​ Select the example post that resonates with you and your message. Copy the entire text of the post by highlighting it and using the copy function (right-click and select "Copy" or press Ctrl+C). Go to your desired social media platform and create a new post. Paste the copied text into the post by right-clicking and selecting "Paste" or pressing Ctrl+V. Customize the post if desired, and add the relevant graphics or videos from our toolkit. You can download the graphics using the instructions provided, and share the videos using the YouTube links provided. Finally, click the "Post" or "Share" button to publish your message and join the movement of raising awareness for arachnoiditis. Note: Make sure to include the appropriate hashtags, such as #ArachnoiditisAwareness, to maximize the reach of your posts and connect with others in the community. ​ We hope these example posts inspire you and make it easier for you to spread awareness about arachnoiditis. Together, let's make a difference and show our support for those affected by this condition. EXAMPLE POSTS: Post #1: Join the Arachnoiditis Awareness Movement! Arachnoiditis is a rare condition causing chronic pain and neurological symptoms. Let's spread awareness and support those affected. Share this graphic and help us make a difference! #ArachnoiditisAwareness #StandStrong #ACMCRN ​ Post #2: Understanding Arachnoiditis Watch this informative video to learn more about arachnoiditis and its impact on individuals' lives. Help us raise awareness by sharing this video. Together, we can make a difference! #ArachnoiditisAwareness #EducateEmpower #ACMCRN ​ Post #3: Did you know? Arachnoiditis affects the protective layers around the spinal cord, leading to chronic pain and nerve damage. Let's spread the word and educate others. Share this graphic to raise awareness about arachnoiditis. #ArachnoiditisAwareness #KnowledgeIsPower #ACMCRN ​ Post #4: Supporting the Arachnoiditis Community Together, we can make a difference for individuals living with arachnoiditis. Share this graphic and let's show our support, raise awareness, and offer hope. #ArachnoiditisAwareness #SupportCommunity #ACMCRN ​ Feel free to use these example posts as a starting point and adapt them to your specific needs. Don't forget to include the relevant graphics or videos from this toolkit and encourage others to share them to maximize the impact of your awareness campaign.

< Back Michael J Brennan Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

​ ARTICLES & RESOURCES ​ Explore an extensive range of informative articles and valuable resources covering a variety of topics on Arachnoiditis and related conditions. Delve into the latest insights, research updates, and clinical updates about Adhesive Arachnoiditis. Gain access to the first patient and public-involved systematic review of arachnoiditis , shedding light on chronic meningitis. Discover the critical role of the leptomeninges in normal CNS development and function. ​ Get a comprehensive understanding of diagnosing Arachnoiditis through "Arachnoiditis Hope," where you can find valuable information on diagnosis. For those seeking guidance on obtaining Social Security Disability Benefits for Spinal Arachnoiditis , find expert advice at "DisabilitySecrets." ​ Extend your exploration to CSF-related topics, including Spinal CSF Leaks. Dive into resources from organizations like "Spinal CSF Leak Association" and "Spinal CSF Leak Canada" to learn more about spinal fluid leak conditions. ​ Further your understanding of Ehler's Danlos Syndrome (EDS) and Connective Tissue Disorders through "EDS Awareness," a comprehensive website offering valuable information. Explore resources provided by the "Tarlov Cyst Foundation," "Tarlov Cyst Society Europe," and the "Vigdis Thompson Foundation," focusing on Tarlov and Arachnoiditis Cysts. ​ Access additional resources for healthcare professionals, researchers, teachers, students, patients, families, and friends through organizations like NIH, NORD, Rare Connect, and more . Global resources and international-serving groups such as EURORDIS and Beacon Findacure offer a broader perspective on rare disease networks. ​ Whether you're a medical professional, researcher, patient, or supporter, these resources aim to empower and inform individuals within the Arachnoiditis community and beyond. Explore these insights to stay informed and engaged in the world of Arachnoiditis research, advocacy, and education. ​ ARACHNOIDITIS Adhesive Arachnoiditis: No Longer a Rare Disease Adhesive Arachnoiditis: A Clinical Update (practicalpainmanagement.com) ​ First patient and public involved systematic review of arachnoiditis (chronic meningitis) The leptomeninges as a critical organ for normal CNS developme\nt and function ​ Diagnosing Arachnoiditis- Arachnoiditis Hope https://arachnoiditishope.com/diagnosis/ Arachnoiditis Hope- Bulletins https://arachnoiditishope.com/protocols/ How to Get Social Security Disability Benefits for Spinal Arachnoiditis-SSDI How to Get Disability Benefits for Spinal Arachnoiditis | DisabilitySecrets ​ Read about the horrors of Panto paque aka Myodil A TOO TOXIC X-RAY DYE USED IN AMERICA AND AUSTRALIA KNOWN AS PANTOPAQUE OR MYODIL ​ CSF Spinal CSF Leak-Spinal fluid leak https://spinalcsfleak.org/about-us/ CSF Leak Association https://csfleak.info/ Spinal CSF Leak Canada https://www.spinalcsfleakcanada.ca/?fbclid=IwAR1RyYpkaSfq_5vwiJZu03EX_hrSS0Wkc8uAg9X6UZbKX7I5rHtRhGGHcEU ​ Ehler's Danlos Syndrome (EDS)-Connective Tissue Disorders EDS Awareness- great website for EDS information https://www.chronicpainpartners.com/how-to-improve-your-quality-of-life-while-living-with-ehlers-danlos/ ​ TARLOV /ARACHNOIDITIS CYSTS Tarlov Cyst Foundation https://www.tarlovcystfoundation.org/ Tarlov Cyst Society Europe https://www.facebook.com/groups/tarlovcysteurope/?ref=share Vigdis Thompson Foundation Dr. J. Peter Warnke (Tarlov Cyst & Arachnoiditis) https://www.vigdis-thompson-foundation.org/de/ ​ MISC RESOURCES How to get Social Security Disability Benefits for Spinal Arachnoiditis https://www.disabilitysecrets.com/resources/how-to-get-disability-benefits-spinal-problems.htm ​ Disease Info Search https://www.diseaseinfosearch.org/search?term=arachnoiditis National Center for Advancing Translational Sciences (NCATS) https://ncats.nih.gov/ NIH (National Institutes for Health ) https://rarediseases.info.nih.gov/diseases/5839/arachnoiditis Rare Disease Networks GARD-Genetic and Rare Disease Network https://rarediseases.info.nih.gov/diseases/5839/spinal-arachnoiditis For Patients Families and Friends: https://rarediseases.info.nih.gov/guides/pages/96/patients-families-and-friends Healthcare Professionals: https://rarediseases.info.nih.gov/guides/pages/97/healthcare-professionals Researchers: https://rarediseases.info.nih.gov/guides/pages/98/researchers Teachers and Students: https://rarediseases.info.nih.gov/guides/pages/99/teachers-and-students Global Genes https://globalgenes.org/disease/arachnoiditis/ NORD https://rareaction.org/ https://rarediseases.org/about/ https://rarediseases.org/get-involved Rare Connect for Arachnoiditis https://www.rareconnect.org/en/community/arachnoiditis Rare Disorders New Zealand https://raredisorders.org.nz/ Medics 4 Rare Diseases https://www.m4rd.org/ Chan Zuckerberg Rare as One https://chanzuckerberg.com/science/programs-resources/rare-as-one/ Global Resources & International Serving Groups Beacon Findacure Primary Beneficiaries are Patient Groups https://www.rarebeacon.org/rare-diseases/why-patient-groups-matter/ Canadian Organization for Rare Disorders http://www.raredisorders.ca/cord-membership/our-members/ EURORDIS Rare Disease Europe https://www.eurordis.org/ Orphanet EU Rare Disease Resource The portal for rare diseases and orphan drugs https://www.orpha.net/consor/cgi-bin/Disease_Search_Simple.php?lng=EN&diseaseGroup=Arachnoiditis PARACELSUS-KLINIK ZWICKAU https://www.paracelsus-kliniken.de/akut/zwickau/fachbereiche/neurochirurgie/ Rare Connect Arachnoiditis Group Connecting Rare Disease Patients Globally https://www.rareconnect.org/en/community/arachnoiditis Rare Disorders New Zealand https://raredisorders.org.nz/ Vidgis Foundation by Dr. J Peter Warnke https://www.vigdis-thompson-foundation.org/de/informationen-fuer-betroffene/behandlungsmoeglichkeiten ​ ArachnoiditisArticles CSF Leak & Blockage Connective Tissue Disorders Tarlov Cysts Misc Articles Rare Disease Orgs

Emmalyn Freeze READ STORY READ STORY Featured Stories Read More Stories Allan Schwartz Enoch Carter Kaatje Tiffany Johanna Tognozzi Tiffany Gaudett Do you have Arachnoiditis or are a caretaker of someone with Arachnoiditis and have a story you'd like to share with us send us an email with a breif outline and we will be back in touch with you about possibly including it as a featured Faces of Arachnoiditis story. ​

Welcome to our first annual Giving Tuesday event at ACMCRN. We're grateful for our members and thankful to have you all here today. ​ Giving Tuesday started in 2012 as a simple idea to encourage people to do good. Over the years, it has grown into a global movement that inspires millions of people to give, collaborate, and celebrate generosity year-round. ​ This day is an opportunity for people around the world to come together in unity and use their power of generosity to stay connected and heal. While Giving Tuesday happens every week, the annual global celebration of generosity only happens once a year. ​ We invite you to join the global Giving Tuesday movement and consider donating to ACMCRN. Your contribution helps us unleash the power of small nonprofits like ours to fulfill our mission of raising awareness for Arachnoiditis through research, education, and advocacy. We appreciate all donations, no matter the size. DONATE NOW GivingTuesday

< Back Anthony C Bianco II Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Tampa Pain Relief Centers Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

KAATJE “GOTCHA” VAN DER GAARDEN In 2015, an orthopedic physician officially diagnosed me with adhesive arachnoiditis, but my problems with severe pain started decades sooner. I’d survived a nighttime skydiving accident which led to cauda equina syndrome, crushed sacral nerves, and lost two inches of spinal height from the 70 mph landing on my tailbone. Sitting had been painful, and I took a pillow with me wherever I went. But over the years the burning, stabbing pain had worsened to the point where even the skin on my trunk hurt. In 2010 I was diagnosed with central cord syndrome due to a benign spinal tumor at chest level, which meant another incurable neuropathic pain syndrome. After almost a decade of working as a physician assistant (with leg braces, wheelchair, cane or walker) I slowly descended into a soul crushing existence, which trapped me inside my body. Despite swimming three times a week, I succumbed to the crippling pain and became confined to my memory foam bed, lying on my right side. Ice packs against my tailbone and a steady level of pain medications (small amount of opiates, large dose of gabapentin) barely enabled me to keep writing. I jotted down observations and jokes in an attempt to keep up my spirit. When I found out a nearby open mic had a couch, I schlepped my painful body and manual wheelchair there, to perform live. After a lifetime of extravagant adventures such as pre-accident solo hikes and ice climbing, and much later, academic, rewarding challenges, I faced my personal demons: Performing in front of an audience with my lifelong insecurity, and loneliness. Among painfully cold winters in the high desert, I kept swimming and performing as if my life depended on it. Which it did. But it wasn’t enough, and the pain told me the only way out was exiting this life. My sister flew in from Holland, and drove me to a ketamine clinic, and that was the start of another adventure, in pain management. I responded well, but ketamine wasn’t a cure, and I slowly accommodated being hospitalized four times a year until I stumbled upon the right protocol of two nights, every eight weeks. Ketamine enabled me to write a wonderful, evidence based memoir and practical advice book for chronic pain patients, “The Queen of Ketamine.” Unexpectedly, both my parents passed away in 2020. My mom’s death broke my heart, at a time when my Navajo boyfriend lost three beloved relatives. Day to day life is still a struggle, and I had life-altering treatment in a Zoom ACT group. Thanks to the ketamine treatments however, I live independently with minimal home health care. In May 2021, I started creating beautiful art with my mom’s brushes, feeling guided by her artist spirit and love. A few weeks ago my insurance said the ketamine inpatient hospitalizations will no longer be reimbursed. So I’m facing my greatest battle yet, and although the future seems bleak I’m trying not to panic. This beautiful and heartbreaking fight has just begun. Have a story you'd like to share with us? Send us an email with your story of 500 words or less and we will be in contact with you. ​ ​ EMAIL

JOIN THE FIGHT See how you can join the community by signing up to be a volunteer or staying up to date with our newsletter and blog. TAKE ACTION Wondering what you can do to help, but don't know where to start, you've come to the right place. Most people have no idea that Arachnoiditis exists, including the medical community. You can take the time to educate yourself about Arachnoiditis and share your knowledge on social media and with your community. You can buy Arachnoiditis related merchandise (coming soon to ACMCRN). You can download and bring information to your physician about Arachnoiditis and how to treat it. You can donate to organizations such as ours. These are all ways that will ensure that you are educating your physicians, family and friends, by doing this you are spreading awareness about Arachnoiditis and that's a good thing. Sign up to be notified when we add new content and have special events. So be sure to sign up for our monthly Newsletter. NEWSLETTER STRENGTH IN NUMBERS JOIN OUR COMMUNITY And stay informed by signing up for our newsletter and taking part in our blog. BLOG STUFF THAT WORKS Chime in! Add your data to our Arachnoiditis database to help us gather information to be used in Arachnoiditis research. You will be able to take a look at the data and compare how Arachnoiditis is affecting you compared to others, what treatment methods works best, common symptoms, and much more! Almost 1,000 participants have already taken the survey so start get started now. SURVEY VOLUNTEER REGISTRY Join our ranks by filling out the registry form. REGISTRY

Welcome! ​ ACMCRN is proud to present Arachnoiditis Awareness Month—an entire month dedicated to raising awareness, providing support, and driving positive c hange for individuals affecte d by Arachnoiditis. Throughout this month, we come together as a comm unity to shed light on this debilitating condition and make a meaningful impact in the lives of those living with Arachnoiditis. ​ This page will be updated throughout the month of July, so be sure to bookmark it! The First-Ever Arachnoiditis Patient Registry ​ We are thrilled to announce that we will soon be launching the first-ever Arachnoiditis Patient Registry. This groundbreaking initiative aims to collect comprehensive data from individuals living with Arachnoiditis. By joining the registry, you contribute to a valuable resource that will advance research, enhance understanding, and ultimately improve the lives of those affected by Arachnoiditis. We are anticipating a launch date in July of this year. Stay tuned for more information on how you can participate in this important endeavor and join our NEWSLETTER to be notified when we launch it. Click on the video above to watch and learn more about patient registries! Please be patient as it may take a minute to load, meanwhile, scroll down to see what else we have to offer you. Thank you for your understanding!" ​ Fundraising Merchandise for Arachnoiditis Awareness ​ Support our cause a nd show your solidarity by purchasing exclusive Arachnoiditis Awareness Month merchandise. We offer a range of items, including t-shirts, hoodies, coffee mugs, tote bags, and stickers—all featuring our distinctive awareness design. What makes these purchases even more impactful is that 100% of the profits directly contribute to our efforts to raise awareness, fund research, and provide crucial support to individuals affected by Arachnoiditis. By wearing and using these merchandise items, you not only raise visibility but also make a tangible difference in the lives of those living with Arachnoiditis. Together, we can drive positive change and improve the lives of individuals affected by this condition. SHOP NOW Join us in spreading awareness about Arachnoiditis this July, recognized as Arachnoiditis Awareness Month. We have curated a comprehensive Social Media Toolkit to empower you with the resources you need to make a meaningful impact. ​ Visit our Social Media Toolkit page to access a collection of Facebook profile graphics and videos from our YouTube channel. These powerful visuals are designed to help you raise awareness and start conversations about Arachnoiditis within your online community. ​ By using these resources, you can make a difference and educate others about the challenges faced by those living with Arachnoiditis. Together, we can shed light on this condition, offer support, and inspire hope. Together, we can make a lasting impact! Introducing Our Arachnoiditis Awareness Social Media Toolkit ! Honoring Joseph David: The Faces of Arachnoiditis ​ This Arachnoiditis Awareness Month, we pay tribute to the late Joseph David , a courageous individual who fought valiantly against the p ain and complications caused by Arachnoiditis. His story serves as a reminder of the challenges faced by individuals living with this condition and the urgent need for improved understanding, treatment options, and support. Join us as we share Joseph's story and honor his memory. FACES OF ARACHNOIDITIS Navigating the challenges of Arachnoiditis can be overwhelming, but you don't have to face it alone. Join our Zoom Peer Support program, where patients and caregivers can connect, share experiences, and provide each other with invaluable support. These virtual sessions create a safe and understanding environment to discuss challenges, seek advice, and find solace in a community that truly understands. LEARN MORE Support Our Mission: Donate and Volunteer Today! Where Does Your Donation Go? ​ When you donate to us, your contribution has a significant impact on achieving our mission. As a Canadian non-profit with a global outreach, we are 100% volunteer-driven, ensuring that every dollar goes towards making a difference. Here's where your donation is directed: ​ Patient Registry: Your support helps us establish and maintain the first-ever Arachnoiditis patient registry, providing a crucial platform for patients to upload their medical records. Practitioner Outreach: Funds are allocated to reach out to medical professionals, raising awareness and promoting better diagnosis and treatment practices. Patient Outreach: Your donation helps us support patients directly, providing resources, guidance, and a sense of community for those affected by Arachnoiditis. Community Awareness: We invest in awareness campaigns, education initiatives, and events to spread awareness and reduce stigma surrounding Arachnoiditis. Diagnosis and Treatment Protocols: Your contribution supports the development of standardized protocols for accurate diagnosis and effective treatment options. Education Materials: We create informative materials for both patients and physicians, empowering them with knowledge and resources to manage Arachnoiditis effectively. Running and Maintaining Zoom Peer Support Meetings: Your donation also covers the costs associated with organizing and maintaining Zoom peer support meetings, providing a safe and inclusive space for individuals to connect, share experiences, and support one another. Additionally, your donation assists with other essential expenditures, including website-related expenses such as hosting, email services, domain hosting, and upkeep. It also helps cover non-profit organization overhead expenses and the e-commerce store for fundraising, including platform-associated costs. ​ Volunteer Opportunities: ​ We highly value the skills and expertise of our community members. Before seeking paid contractors, we explore the Arachnoiditis Volunteer Registry to engage those within our community. If you or someone you know would like to contribute their talents, please encourage them to apply at our Arachnoiditis Volunteer Registry . ​ We welcome volunteers of every kind! Whether you can donate your time or financial resources, your support helps us make a meaningful difference in the lives of those affected by Arachnoiditis. Join us in supporting our community and working together towards a brighter future. Healthy volunteers are particularly needed! ​ Please consider donating or volunteering today to help us continue our important work. Together, we can make a significant impact in the fight against Arachnoiditis. ​ DONATE NOW Zoom Peer Support Program for Patients and Caregivers

< Back Kevin Cairns Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Joseph D. Kassa DO Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Christa A. Scheunemann Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Melissa Barclay Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Kort M. Gronbach Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Yousef Ellyaman Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back J Kimber Rotchford Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Duane Densler Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Caroline Snelwar-Fletcher Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Shorin Nemeth Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

Property Listings 10435 Clayton Rd #120, St. Louis, MO 63131 Anesthesia 14145 Wildwood Road, Philomath oregon Pain Management 1021 W 14th St, Hastings, NE 68901 ​ 40 Duke Medicine Circle Clinic 1B/1C, Durham, NC 27710 Neurologist 1950 Main Street West, Hamilton, ON, Canada Physical Rehab

This list is compiled and maintained by ACMCRN . This is a list of physicians who either treat or are knowledgeable about Arachnoiditis. Please take a moment to read the disclaimer . All of the doctors on this list have been submitted by patients with Arachnoiditis and have not been confirmed by ACMCRN. This list is for informational purposes only. ​ ​ To search our physician database, please make your selection. We have two lists, one for the United States and one for International countries. *Important: If you're on a cell phone, scroll down for results after you make your selection. Make your selection United States Search by State International - Outside U.S. Search by Country If you don't see any results below, that's because we don't have any listings in your area. Please check back often as we add new physicians to the database regularly. Search Results: If you have a physician you would like to add to this list, please send us an email and include as much information as possible including name, phone number, address, and website if applicable. Any additional comments about how your physician helps you such as prescribing, therapies, etc. is very helpful.

This list is compiled and maintained by ACMCRN . This is a list of physicians who either treat or are knowledgeable about Arachnoiditis. Please take a moment to read the disclaimer . All of the doctors on this list have been submitted by patients with Arachnoiditis and have not been confirmed by ACMCRN. This list is for informational purposes only. ​ ​ To search our physician database, please make your selection. We have two lists, one for the United States and one for International countries. *Important: If you're on a cell phone, scroll down for results after you make your selection. Make your selection United States Search by State International - Outside U.S. Search by Country If you don't see any results below, that's because we don't have any listings in your area. Please check back often as we add new physicians to the database regularly. Search Results: If you have a physician you would like to add to this list, please send us an email and include as much information as possible including name, phone number, address, and website if applicable. Any additional comments about how your physician helps you such as prescribing, therapies, etc. is very helpful.

< Back Joseph D. Kassa DO Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Dr. Ashner Goldstein Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (201) 645-4336 ​ 160 Overlook Ave #1a, Hackensack, NJ 07601, USA ​

< Back Dr. Brandon Woods Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 ​ 28595 Orchard Lake Road suite 200, Farmington Hills, MI 48334, USA ​

Property Listings 10435 Clayton Rd #120, St. Louis, MO 63131 Anesthesia 14145 Wildwood Road, Philomath oregon Pain Management 1021 W 14th St, Hastings, NE 68901 ​ 40 Duke Medicine Circle Clinic 1B/1C, Durham, NC 27710 Neurologist 1950 Main Street West, Hamilton, ON, Canada Physical Rehab

< Back Raphael Ye Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 ​ 28595 Orchard Lake Road suite 200, Farmington Hills, MI 48334, USA ​

< Back Catherine McNamara, DNP, FNP, APN Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 ​ 28595 Orchard Lake Road suite 200, Farmington Hills, MI 48334, USA ​