Our philosophy, commitment, and financial reports are posted here. Finances Finances Shwachman-Diamond Syndrome Alliance is a US-based nonprofit 501(3)c corporation, serving the global SDS community. Our EIN and IRS determination letter is available, here . 100% of your donation goes into an account dedicated solely to research and therapy development. We pride ourselves on maximizing the impact on SDS patients' and families' lives through running a professional, sustainable, and efficient nonprofit research organization with dedicated, passionate staff. All our operation expenses, including staff compensations, are covered by a separate account with funding from sources such as grants and private dedicated donors. Every single penny of YOUR donation — community donations and fundraisers — goes specifically towards SDS research and therapy development. Our SDS research and therapy development programs may be run in-house, by partnering with research institutions, or by engaging service providers (such as CROs), depending on which route is most efficient. The goal is always to move toward a bright future for SDS patients and their families, following our strategy and roadmap . Our leadership team works highly strategically to ensure that your donation leads to a much bigger impact — bigger than the amount of the donation itself can fund. How do we do that? We use your donation to create preliminary results, critical research tools, and infrastructure, and use them to (1) enable more research and to accelerate them, and (2) to get much bigger grants, from the governmental funding agencies, private foundations, or industry sposors. This strategy continues to supercharge our progress. Further, our leadership team has the expertise to attract world-class partners to put up their own funding for our project — the mouse model project with The Jackson Laboratory being a prime example. Documents IRS Form 990 FY 2023 Form 990 Filing FY 2022 Form 990 Filing FY 2021 Form 990 Filing FY 2020 Form 990-N Other Documents US State Registration Disclosures

Swag is a fun and easy way to show your support while and raising funds and awareness. We strive to make it easy and attractive with items you will be proud to show off and help you feel part of a passionate committed community lased focused on making #CureSDS a reality. Shop for SDS Alliance Swag Swag is a fun and easy way to show your support while raising funds and awareness. It is also a fantastic opportunity to build community and work together towards our shared mission. We strive to make it easy and attractive with items you will be proud to show off and help you feel part of a passionate and committed community laser-focused on making #CureSDS a reality. We are continuously working on expanding our offerings. Please check back often and let us know if you would like to see specific items by emailing us at community@SDSAlliance.org or reaching out on Facebook. Our vendors can ship internationally. However, there may be extra charges and delays with shipping. If you are looking to get merchandise printed for an SDS Alliance fundraiser but closer to home, we are happy to share the design files. Simply email us at community@SDSAlliance.org . Shirts and more at our BONFIRE Store Available year-round. Visit www.bonfire.com/store/CureSDS Need Flyers, Brochures, and more for your next fundraising event? We are here to help. Email us at connect@SDSAlliance.org if you need hard copies. Flyer: What is Shwachman-Diamond Syndrome Personalized fundraising tools , such as flyers, cards, and fundraising web pages! We are here to help! Email us at connect@SDSAlliance.org .

FREE guides and reports for in depth information on all aspects of living with Shwachman-Diamond Syndrome (SDS)! Guides and Reports Click to read, open, or download. If you need a hard copy, email us at connnect@sdsalliance.org to ask. Many of our resources are published on Zenodo and are citable. Visit our Zenodo community page to see all. Free download Go to Guide School Success with SDS A Guide for Students, Families, and School Teams Shwachman-Diamond Syndrome (SDS) is a rare inherited bone marrow failure syndrome that affects multiple organ systems — including the immune system, digestive system, skeleton, and brain — and presents significant challenges in the school setting. Despite its serious impact on learning, cognition, and daily functioning, most teachers, school counselors, and administrators have never encountered SDS before. Families are often the primary source of information for their child's school team. This guide was developed by SDS Alliance to provide practical, evidence-informed tools and strategies for students with SDS, their families, and their school teams. It covers the physical, cognitive, and psychosocial dimensions of SDS in the school context; how to navigate education plans and accommodations in an international framework; neuropsychological evaluation and its role in school support; key educational transitions from early childhood through college; and sample documents including a physician letter template, a family summary sheet, and accommodation language ready for use in formal education plans. A companion resource appendix covers finding neuropsychologists, understanding school rights, and managing learning differences, mental health, and social skills. A companion tool to create a letter to introduce the student to the school team is available at www.sdsalliance.org/school-letter The guide is written for an international audience. Where specific legal frameworks are referenced — such as the IEP and 504 plan processes in the United States — they are labeled as country-specific examples. The principles and strategies are broadly applicable regardless of country of residence. This guide is a companion document to Living with Shwachman-Diamond Syndrome: An Essential Guide, developed by SDS Alliance as part of Project PACER (PCORI Award EASO-42419), and inspired by the Voice of the Patient Report for Shwachman-Diamond Syndrome (Hars & Merker, 2026; doi: 10.5281/zenodo.20126868). Free download Go to Guide Fundraise Your Way to #CureSDS A Guide for Patients, Families, and the whole SDS community Shwachman-Diamond Syndrome (SDS) is a rare, multi-system genetic disorder affecting the immune system, bone marrow, pancreas, and other organs. There is no approved treatment. Accelerating therapy development for SDS requires not only scientific progress but sustained community engagement — including the active participation of patients, families, and supporters in fundraising efforts that signal community strength to research partners and funders. This guide, published by SDS Alliance — a US-based 501(c)(3) nonprofit organization dedicated to driving research and therapy development for SDS — provides a practical, accessible framework for community fundraising. It covers eight fundraising options ordered by effort level, from employer gift matching to organizing independent local events. It also includes storytelling guidance with an example and fill-in template, ready-to-use social media templates, an appeal letter template, a step-by-step guide to setting up a peer-to-peer fundraising page, and an overview of tools and support SDS Alliance provides to community fundraisers. The guide reflects SDS Alliance's broader philosophy that community fundraising in rare disease is not merely a revenue strategy but a form of clinical trial readiness infrastructure. The size, engagement, and organized participation of a patient community are signals that biotech partners, academic researchers, and major funders actively evaluate when deciding whether to invest in a rare disease indication. This is part of a series of community guides and educational resources published by SDS Alliance in support of its mission to reach clinical trials for SDS by 2030 to give SDS families more birthdays to celebrate. KEYWORDS: Shwachman-Diamond Syndrome, SDS, rare disease, patient advocacy, community fundraising, peer-to-peer fundraising, clinical trial readiness, rare disease research, gene therapy, patient engagement, nonprofit, community engagement RELATED LINKS: Guide landing page: https://www.sdsalliance.org/fund-guide SDS Alliance fundraising page: https://www.sdsalliance.org/fundraise SDS Alliance website: https://www.sdsalliance.org Free download Go to Report Voice for the Patient Report The official report from the Externally-led patient Focused Drug Development Meeting held June 4th, 2025 This Voice of the Patient Report summarizes the experiences and perspectives of patients and caregivers living with Shwachman-Diamond Syndrome (SDS), shared during the Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting held online and in Cincinnati, OH, on June 4th, 2025. The meeting was convened by the Shwachman-Diamond Syndrome Alliance (SDS Alliance) and attended by patients, caregivers, clinicians, researchers, and representatives from the US Food and Drug Administration (FDA). SDS is a rare, life-threatening genetic disorder that causes bone marrow failure, immune deficiency, exocrine pancreatic insufficiency, and a significantly elevated risk of leukemia, among other serious complications. There are currently no disease-modifying therapies for SDS. The report documents patient and caregiver perspectives on the burden of living with SDS, current treatments and their limitations, and priorities for future therapy development. Key themes include: frequent and severe infections due to neutropenia and immune deficiency, and their impact on daily life; challenges with the skeletal system, mobility, and pain; digestive issues (exocrine pancreatic insufficiency), liver, and failure to thrive; challenges with mental health and cognitive impacts; the fear of leukemia and its profound impact on daily life; the burdens and benefits of hematopoietic stem cell transplant (HSCT); need for disease-modifying and leukemia-preventing therapies, and The importance of treatment tolerability and formulation, including for pediatric patients. This report was prepared for submission to the FDA and is intended to inform drug development, regulatory decision-making, and research prioritization for SDS.

A large fraction of the Shwachman-Diamond Syndrome (SDS) community will need a bone marrow transplant (aka stem cell transplant) in their lifetime. You can make a life saving gift if you match a patient by registering on a bone marrow registry near you, such as Be The Match, or DKMS. Save a Life through stem cell donation SDS patients are at high risk of needing a life saving bone marrow / stem cell transplant during childhood, young adulthood, and beyond. Currently, it is the only curative treatment for several life threatening bone marrow complications of SDS, including acute myeloid leukemia (AML), myelodysplastic syndrome (MDS), aplastic anemia, and bone marrow failure. About 1 in 3 SDS patients will need a bone marrow transplant by age 30, for a chance to survive. Therefore, we passionately support bone marrow and stem cell donation programs, as our patient community critically depends on healthy individuals to save our loved-ones lives. 70% of patients don't have a fully matched donor in in their family, and will rely on generous donors like you. See this beautiful and moving story from a family in NY, aired on 2/17/2023 on ABC7NY . To sign up to be on the national (US) bone marrow registry through Be The Match, please sign up through the link below. You need to be in good health and between the ages of 18 and 44 in order to qualify for free. More details are available on the sign-up page. https://join.bethematch.org/SwabForSDS Alternatively, you can register with DKMS at https://www.dkms.org/, free up to age 55. Find a stem cell registry outside of the US / globally Be The Match has cooperative relationships with many other registries around the globe, allowing them to search their registries, and for them to search Be The Match when seeking a match. To view these cooperative registries and international donor centers, visit http://bethematch.org/About-Us/Global-transplant-network/ . A listing of all registries is available on the World Marrow Donor Association (WMDA) website at https://share.wmda.info/display/WMDAREG/Database . JOINING the Be The Match Registry Joining the registry involves multiple steps. It is a defining moment in a person’s life—a declaration of their values and commitment to help others. Joining the Be The Match Registry means volunteering to be listed as a potential blood stem cell donor, ready to help any patient in need of a life-saving donation. It’s easy to join the registry. All it takes is a simple cheek swab. You need to be healthy and willing to help any patient. Because of the genetic complexity of matching donors to patients, it could be several months, or many years before you’re matched to a patient and asked to donate. Being on the registry is like being on the world’s best waiting list. You could be someone’s only genetic match—their only hope for a cure. FIVE STEPS TO SAVE A LIFE Donating isn’t just something you do—joining the registry is a promise to stay committed and donate when needed. Register online – Answer simple questions about your medical history to make sure you meet health guidelines . Receive a cheek swab kit by mail in about 3-7 business days. Swab your cheek and return the kit – Your sample will be tested and your genetic type will be added to the Be The Match Registry. Stay committed while you wait to be matched – Because of the genetic complexity of matching donors to patients, it could be several months or many years before you’re matched to a patient. Say “Yes” when asked to donate – Patients and their families are counting on you to keep your promise to donate if needed. You could be someone’s only hope for a cure. PATIENTS IN NEED Patients in need of a life-saving blood stem cell transplant count on Be The Match to find them a genetically matched donor. Every three minutes, someone in the United States is diagnosed with a blood cancer. Right now, thousands of patients with blood cancers and other deadly diseases are desperately searching for their genetic match; someone willing to donate life-saving blood stem cells to be their cure. Seventy percent of patients do not have a fully matched donor in their family. They depend on Be The Match to find an unrelated blood stem cell donor. THE NEED FOR YOUNG ADULT DONORS Young adult donors are especially needed to help patients in need of a life-saving blood stem cell donation. Young adult donors have the healthiest, most robust blood stem cells, which produce the best results for patients. When given a choice of genetically matched donors, transplant doctors choose younger donors 85% of the time. We need healthy young donors to replace older registry members as they age off at 61. The vast majority of donors say it was worth it to save a life, and they would do it again. HOW BLOOD STEM CELL TRANSPLANT WORKS Donors want to understand how a transplant works so they can easily explain how their donation could save someone’s life. Your healthy blood stem cells can be a cure for someone with blood cancer or other deadly disease. A blood stem cell transplant works by replacing the patient’s diseased blood stem cells with healthy cells from a genetically matched donor. The transplant replaces the patient’s entire blood and immune system. Donors and patients need to be a close genetic match. Matching is based on genetic markers called human leukocyte antigen (HLA). Because genetic markers used in matching are inherited, donors are most likely to match someone who shares the same ethnic background. Genetic type used to match donors and patients is much more complex than matching blood type. In fact, they don’t need to be the same. The patient’s blood type will change to the donor’s blood type after transplant. HOW DONATION WORKS Donors want to understand how the donation process works so they can be confident in their decision to donate. There are two donation methods: peripheral blood stem cell (PBSC) donation, and marrow donation. The patient’s doctor decides the donation method that is best for the patient. PBSC Donation Most donors (75%) are asked to provide blood stem cells collected from the circulating blood. This is called a peripheral blood stem cell donation, or “PBSC donation.” PBSC is a nonsurgical procedure, called apheresis. It’s similar to donating platelets. For five days leading up to donation, the donor is given shots of a drug called filgrastim that increases the number of blood-forming stem cells in the bloodstream. On the fifth day, blood is drawn from one of the donor’s arms and circulated through a machine that filters out the stem cells and returns the remaining blood to the donor. Most donors visit with friends or binge watch TV during the procedure. Side effects and recovery Leading up to a PBSC donation, donors may experience headaches or body aches several days before collection due to side effects of the filgrastim. These side effects go away shortly after the donation. PBSC donors are typically back to their normal routine in 1 to 2 days. Most PBSC donors report a full recovery within 7 to 10 days of donation. Be The Match follows up with donors until they report a full recovery. MARROW Donation Some donors (25%) are asked to provide blood stem cells collected from bone marrow. Marrow donation is a surgical procedure that takes place in a hospital operating room. The donor receives anesthesia and feels no pain during the procedure. Doctors withdraw blood stem cells from small punctures in the back of the donor’s pelvic bone. Side effects and recovery Discomfort during recovery varies from person to person. Side effects may include back pain, fatigue, headache or bruising for a few days or weeks. Donors are typically back to their normal routine in 2 to 7 days. The median time to full recovery for marrow donors is 20 days. ETHNIC BACKGROUND Be The Match is committed to addressing this disparity by recruiting donors who increase diversity of genetic types underrepresented on the registry. Patients are most likely to match donors who share the same ethnic background because genetic traits used to determine a match are inherited. Because some tissue types are uncommon or rare, there are still many patients who can’t find a match. You might be the only person who could be someone’s cure. Some ethnic groups and multiracial individuals have more complex tissue types than others, which makes it harder to find a match. Children with parents from different ethnic backgrounds are inheriting new and unique genetic combinations. LIKELIHOOD OF FINDING A MATCH Be The Match recognizes ethnic background contributes to a patient’s likelihood of finding a match on the Be The Match Registry. We are committed to sharing this information to motivate more people to join. Given the current makeup of the Be The Match Registry, the likelihood of finding a match for patients in need of a transplant ranges from 23-77% depending on patient ethnic background. Improving the ethnic diversity of the registry improves all patients’ odds of finding a life-saving match, regardless of their ethnic background. More people are needed to join the registry so patients have a greater chance of finding a match.

It's finally here: the first ever virtual global fun run/walk event to support Shwachman-Diamond Syndrome (SDS) research! Fundraiser October 2020 Meet The Team It's finally here: the first ever virtual global fun run/walk event to support Shwachman-Diamond Syndrome (SDS) research! With this fundraising campaign, we are raising funds to accelerate therapy and cure development for Shwachman-Diamond Syndrome, a rare genetic cancer predisposition disorder that affects thousands of children and adults world wide. Shwachman-Diamond Syndrome Alliance's mission is to accelerate therapy development and a cure for SDS - in particular to eliminate the deadly leukemia risk in SDS - in a time frame that matters to our children and thousands of SDS patients world wide. Our focus is research and development: we raise funds for the most cutting edge research, build collaborations globally, and invest into critical research tools and infrastructure, now. One million steps is certainly too much for any single person. But together, the steps add up. We can get there! Register above, and you will receive an email invitation to join the challenge and track your steps through Count.it.

Join our mailing list as the first step to join our Global Network and community. You will receive a personalized welcome email with resources, newsletters, and updates every 2-3 months. Join our Mailing List and Global Network We take your privacy very seriously. We never sell or share your information outside our organization, and only use your information to customize our communications to fit your needs. You can unsubscribe anytime by clicking on the link at the bottom of the emails, or by contacting us via email at connect@sdsalliance.org .

Patient Advocacy and Partneting Summit. The first, global, virtual event designed to engage all stakeholders and provide meaningful education and networking opportunities to patients, scientist, medical providers, industry representatives and regulatory stakeholders. POPS Global Patient Advocacy and Partnering Summit The first global, virtual, meeting of its kind to provide patients, caregivers, scientists, physicians, and all other stakeholders with an opportunity to connect and discuss all things related to Shwachman-Diamond Syndrome research and advocacy. REGISTER HERE! Registration is now closed. To access the recordings, log in to the meeting platform (below). For assistance or to request access, email Ashley Ferreira at outreach@SDSAlliance.org. Agenda Tentative, subject to change. All times in ET (New York Time) 10:00 AM - 11:00 AM Networking Breakout rooms with prompts to help build connections. All attendees and speakers welcome! 11:00 AM - 12:00 PM Welcome and Patient Stories Welcome by Dr. Eszter Hars ➲ Mother of an SDS Patient, President & CEO, SDS Alliance Featuring three SDS community members Gracie Van Brunt , Musician/Songwriter with SDS ➲ Lisa Superina , Mother of two children with SDS ➲ Julie Martindale , Mother of a teen son with SDS ➲ 12:00 PM - 12:20 PM Lunch Break See you back here in a few! 12:20 PM - 12:45 PM Reflections from the Scientific Congress The 10th International Scientific Congress on Shwachman-Diamond Syndrome took place this April in Cambridge, UK. Dr. Eszter Hars ➲ had the privilege to attend as a parent and will share with you a high-level overview of public information with context from published literature. We won't share any unpublished results or private discussions, of course. 12:45 PM - 1:45 PM Therapeutic Targets Introduction by Dr. Eszter Hars ➲ Featured Experts: Dr. Christian Brendel ➲ DNA Targeting and Gene Therapy Approaches Dr. Valentino Bezzerri ➲ RNA and RNA-Based Targeting Approaches Speaker TBD Protein and Ribosome Biogenesis Targeting Approaches 1:45 PM - 2:00 PM Coffee Break See you back here in a few! 2:00 PM - 2:40 PM How to make the Patient Voice count Overview by Dr. Eszter Hars ➲ Featured Expert: Dr. Alexandre Bétourné ➲ The Importance, Challenges, and Impact of Data Sharing in Rare Disease 2:40 PM - 2:45 PM Closing Remarks A summary of the Summit, with opportunities to get involved at every level. 2:45 PM - 3:30 PM Networking A fun activity for all to connect. All attendees and speakers welcome! Speakers In alphabetical order Dr. Alexandre Bétourné Alexandre Bétourné, Ph.D., Pharm.D., is Executive Director for the Rare Disease Cures Accelerator-Data and Analytics Platform initiative and previously served as its Scientific Director. Dr. Bétourné works with the RDCA-DAP team to expand its reach into new diseases areas accessing new data and enhancing C-Path’s relationships within the rare disease community. He holds both a PhD and a PharmD from the University of Toulouse in France, has three patents, and has written multiple papers that intersect with several different rare disease areas. Before joining C-Path, he led a team of senior U.S. scientists, CMC and regulatory consultants at a small company developing therapies for amyotrophic lateral sclerosis (ALS). Dr. Valentino Bezzerri Dr. Valentino Bezzerri is Principal Investigator, Cystic Fibrosis Center, Azienda Ospedaliera Universitaria Integrata di Verona, Italy. His research interest is mainly focused on the molecular mechanisms underlying the pathogenesis of inherited bone marrow failure syndromes (IBMFS), specifically in regards to the Shwachman-Diamond syndrome. In addition, my group is investigating the effect of PTC-readthrough inducer drugs (e.g. ataluren) on the restoration of nonsense mutated SBDS gene expression and function. Dr. Christian Brendel Dr. Christian Brendel is Assistant Professor of Pediatrics at Dana-Farber/Boston Children's Hospital Cancer and Blood Disorders Center, Harvard Medical School. Dr. Brendel’s research focuses on gene therapy for inherited diseases of the blood system. He contributed to the development and clinical translation of lentiviral gene therapies for X-CGD and Sickle Cell Disease, and his current research includes genome editing and the design of new delivery tools to make future gene therapies safer, more effective and accessible. Dr. Eszter Hars Dr. Eszter Hars, Mother of an SDS patient, and Founder/President/CEO/Science Director of the Shwachman-Diamond Syndrome Alliance. Dr. Hars holds a Ph.D. in Molecular Biology from the University of Medicine and Dentistry of New Jersey, where she studied cancer and leukemia. She has over 20 years of experience in scientific research and the biotech industry. As VP of Regulatory Affairs at CytoVera Inc., a lab equipment developer for hematopoeitic stem cell banking, Dr. Hars was in charge of regulatory approval of medical devices by the U.S. Food and Drug Administration. Dr. Hars has also managed business development as well as customer relationships at Quosa Inc., an information technology company, which was acquired in 2012 by Elsevier, the largest scientific publisher in the world. Currently, Dr. Hars is President of a biotech startup that specializes in developing new tools for various new therapies, including CAR-T cell cancer therapy and beta cell replacement therapy for diabetes. Dr. Hars has been engaged in SDS community building and volunteering wherever possible, since her daughter was diagnosed with Shwachman-Diamond Syndrome (SDS) in 2015. In 2020, Dr. Hars founded the SDS Alliance, a 501(c)(3) nonprofit organization. Through the SDS Alliance, Dr. Hars is dedicated to accelerating the development of new therapies for SDS. Julie Martindale Julie Martindale is the parent of Elijah, a 17 year old with SDS. Along with her husband Mark, they have raised 11 children, many who have medical complexities. Julie has worked to assure our children's stories are told and never forgotten. She holds a bachelors degree in psychology and two years advanced training in child welfare. Lisa Superina Lisa lives on Long Island, New York, with her husband and four daughters. Her two youngest daughters, Nora and Kayla, were genetically diagnosed with SDS after an extensive diagnosis journey - read their story, here. Lisa is a Special Education Teacher at Half Hollow Hills High School West in Dix Hills, New York. She has certifications from Birth-12th grade in Special Education, General Education, and English Language Arts and has a master's degree in Literacy. Lisa is passionate about helping the SDS community by supporting research and helping families advocate for their children. She jumped into action on the very same day her first child was diagnosed, raising funding, researching resources, and connecting with SDS families everywhere, and has not stopped ever since. Her drive and creativity have inspired countless other families to engage and she is an unstoppable positive driving force toward therapies and cures for people with SDS everywhere. In her role at the SDS Alliance, she helps find and support new SDS families, identify and offer new resources for families, and develop family educational materials and events. Gracie Van Brunt Gracie Van Brunt is a 28 year old singer/songwriter/topliner from Boston, MA. When she was two years old, she was diagnosed with a rare disease called Shwachman-Diamond Syndrome which affects her bone-marrow, skeleton and pancreas. There are an estimated 5,000 known cases world-wide. She spent the first 6 years of her life in and out of the hospital battling this illness and in 2019 received a bone-marrow transplant with her brother being her doner. Gracie started singing when she was 6 and writing when she was 12 and has written over 1,000 songs in her lifetime. After attending the prestigious Berklee College of Music and majoring in Songwriting for two years, she moved to Los Angeles to pursue her songwriting and vocal career. She is now cementing her place in electronic music with her ethereal, yet sultry vocals and infectiously catchy lyricism. The acclaimed singer, songwriter, recording artist and vocal producer has garnered over 4 million streams across multiple genres, emerging as one of EDM’s most versatile and highly sought after vocalists. With the electronic genre of Drum & Bass on the rise, she is leading the charge in spreading drum and bass across the states, with her massive collaborations with DNB icons like “Deep Blue” with Kanine, which has almost 2 million streams, and “Alone” with Culture Shock, which has almost a million streams along with her most recent collaboration, “Commencement” with Dubstep Legend, 12th Planet. Gracie’s 2022 live festival performances include Insomniac’s Beyond Wonderland, Project Z and Lost in Dreams Festivals, as well as Excision’s Lost Lands Music Festival. She also performed “Live For The Highs” with GAWM to a sold out crowd at Exchange LA located in Los Angeles, California. Gracie continues to be an advocate not only in the Shwachman Diamond Syndrome Community, but in the rare disease community in general appearing on patient panels, supporting families looking for guidance and sharing her story through her music. She is the recipient of the 2013 Rare Champion of Hope Patient Advocacy Award, has performed at many different Rare Disease Conferences and Galas including multiple times at the Global Genes Conference and is an advocate for all SDS patients. Dr. Alexander Betourne Dr. Velentino Bezzerri Dr. Christian Brendel Dr. Eszter Hars Julie Martindale Lisa Superina Gracie Van Brunt Dr. Alan Warren

Shwachman-Diamond Syndrome event from around the globe! SDS Community and Scientific Events Calendar September 2026 Today Sun Mon Tue Wed Thu Fri Sat 30 31 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 1 2 3 4 5 6 7 8 9 10 Upcoming Events Multiple Dates Global SDS Family Coffee Chat Mar 08, 2026, 3:00 PM – 5:00 PM Virtual event Monthly virtual get-together to build community and support. Share Details SDS PFDD Meeting (Externally-Led Patient Focused Drug Development Meeting for Shwachman-Diamond Syndrome) Jun 04, 2025, 10:00 AM – 3:30 PM Location is TBD The SDS PFDD meeting is a very special and unique opportunity for patients and families to come together and share our voices and stories with the purpose of accelerating research and improving care. The meeting is part of our "100 Voices to #CureSDS" campaign. Don't miss it! Share Details Community Webinar/Q&A about the SDS PFDD meeting planned for this summer Jan 23, 2025, 4:00 PM – 5:00 PM Zoom Share Details SDS POPS 2024: Patient AdvOcacy and Partnering Summit Oct 20, 2024, 1:00 PM – 5:00 PM https://www.sdsalliance.org/sds-pops The only global, virtual meeting of its kind to provide patients, caregivers, scientists, physicians, and all other stakeholders with an opportunity to connect and discuss all things related to Shwachman-Diamond Syndrome research and advocacy. Share Details Ask an Expert: Dr. Lisa McReynolds on Clones, Germline, and Somatic Mutations, and why they matter for SDS May 19, 2024, 2:00 PM – 3:00 PM EDT Virtual. Register at sdsalliance.org/cce Share Details SickKids 8th National Marrow Failure & Myelodysplasia (MFM) Patient and Family Virtual Conference Apr 13, 2024, 1:00 PM – 7:00 PM EDT free virtual event This meeting is for patients and families with bone marrow failure disorders and myelodysplastic syndrome, physicians, other health-care workers, fellows, residents and all others who are interested in the field. Children and adult patients are welcome. Share Details POPS: Global Patient Advocacy and Partnering Summit May 20, 2023, 10:00 AM – 3:00 PM EDT Virtual event The first global, virtual, meeting of its kind to provide patients, caregivers, scientist, physicians, and all other stakeholders access to the latest information on all things Shwachman-Diamond Syndrome. Share Details 10th International Congress on Shwachman-Diamond Syndrome Apr 18, 2023, 9:00 AM EDT – Apr 21, 2023, 1:00 PM EDT Robinson College, Cambridge, UK, Grange Rd, Cambridge CB3 9AN, UK This Congress is held every other year in different locations throughout Europe and North America. It is the only scientific congress dedicated to Shwachman-Diamond Syndrome. Due to the global Covid-19 pandemic, the event was postponed several times. Now scheduled for April 18-21, 2023! Share Details 4e journées des neutropénies (4th French National Neutropenia Days) Mar 24, 2023, 9:00 AM – 4:00 PM GMT+1 Paris, Paris, France Nous vous invitons aux 4e journées des neutropénies qui se tiendront les vendredi 24 et samedi 25 mars prochain. Share Details SickKids Canada - National MFM Virtual Patient and Family Conference Apr 30, 2022, 12:00 PM – 6:00 PM EDT Virtual The National Marrow Failure & Myelodysplasia program at SickKids Canada is pleased to invite you to this interactive meeting. It is an ideal opportunity to learn, network with other families and meet experts in the field. Share Details Fun-Run-Walk October 2020 Oct 24, 2020, 7:00 AM EDT – Nov 01, 2020, 11:00 PM EST Virtual run/walk, location of your choice It's finally here: the first ever virtual global fun run/walk event to support Shwachman-Diamond Syndrome (SDS) research! www.SDSAlliance.org/steps Share Details Postponed. New Date TBD. SDSF Family Conference at Camp Sunshine (ME, USA) Jul 12, 2020, 2:00 PM EDT – Jul 16, 2020, 10:00 AM EDT Camp Sunshine, Cosco, ME, USA, Cosco, ME SDSF (SDS Foundation) hosts a 6-day session at Camp Sunshine every other summer for SDS families to meet with each other and meet and learn from the top SDS experts in North America. Share Details Paint with us! Rare Disease Day Fundraiser for SDS, Metro Boston Feb 29, 2020, 2:00 PM – 5:00 PM EST Painting with a Twist, North Andover, MA, 10 High St, North Andover, MA 01845, USA SDS Alliance partnered with Painting with a Twist in North Andover to host a painting event as a fundraiser. Share Details SDS Registry Family Day in Boston, MA, US Sep 15, 2019, 8:00 AM – 4:00 PM EDT Boston, MA, Harvard Medical School Joseph B Martin Center 77 Avenue Louis Pasteur NRB 133 Boston, MA 02155 Celebrating the SDS Registry's 10th anniversary! Please join us for a complimentary day of education, connection, and fun! - Hear updates from the SDS Registry - Learn about exciting research - Discover cutting-edge clinical trials for SDS - Connect with other SDS families Share Details Past Events Multiple Dates Global SDS Family Coffee Chat Mar 08, 2026, 3:00 PM – 5:00 PM Virtual event Monthly virtual get-together to build community and support. Share Details SDS PFDD Meeting (Externally-Led Patient Focused Drug Development Meeting for Shwachman-Diamond Syndrome) Jun 04, 2025, 10:00 AM – 3:30 PM Location is TBD The SDS PFDD meeting is a very special and unique opportunity for patients and families to come together and share our voices and stories with the purpose of accelerating research and improving care. The meeting is part of our "100 Voices to #CureSDS" campaign. Don't miss it! Share Details Community Webinar/Q&A about the SDS PFDD meeting planned for this summer Jan 23, 2025, 4:00 PM – 5:00 PM Zoom Share Details SDS POPS 2024: Patient AdvOcacy and Partnering Summit Oct 20, 2024, 1:00 PM – 5:00 PM https://www.sdsalliance.org/sds-pops The only global, virtual meeting of its kind to provide patients, caregivers, scientists, physicians, and all other stakeholders with an opportunity to connect and discuss all things related to Shwachman-Diamond Syndrome research and advocacy. Share Details Ask an Expert: Dr. Lisa McReynolds on Clones, Germline, and Somatic Mutations, and why they matter for SDS May 19, 2024, 2:00 PM – 3:00 PM EDT Virtual. Register at sdsalliance.org/cce Share Details SickKids 8th National Marrow Failure & Myelodysplasia (MFM) Patient and Family Virtual Conference Apr 13, 2024, 1:00 PM – 7:00 PM EDT free virtual event This meeting is for patients and families with bone marrow failure disorders and myelodysplastic syndrome, physicians, other health-care workers, fellows, residents and all others who are interested in the field. Children and adult patients are welcome. Share Details POPS: Global Patient Advocacy and Partnering Summit May 20, 2023, 10:00 AM – 3:00 PM EDT Virtual event The first global, virtual, meeting of its kind to provide patients, caregivers, scientist, physicians, and all other stakeholders access to the latest information on all things Shwachman-Diamond Syndrome. Share Details 10th International Congress on Shwachman-Diamond Syndrome Apr 18, 2023, 9:00 AM EDT – Apr 21, 2023, 1:00 PM EDT Robinson College, Cambridge, UK, Grange Rd, Cambridge CB3 9AN, UK This Congress is held every other year in different locations throughout Europe and North America. It is the only scientific congress dedicated to Shwachman-Diamond Syndrome. Due to the global Covid-19 pandemic, the event was postponed several times. Now scheduled for April 18-21, 2023! Share Details 4e journées des neutropénies (4th French National Neutropenia Days) Mar 24, 2023, 9:00 AM – 4:00 PM GMT+1 Paris, Paris, France Nous vous invitons aux 4e journées des neutropénies qui se tiendront les vendredi 24 et samedi 25 mars prochain. Share Details SickKids Canada - National MFM Virtual Patient and Family Conference Apr 30, 2022, 12:00 PM – 6:00 PM EDT Virtual The National Marrow Failure & Myelodysplasia program at SickKids Canada is pleased to invite you to this interactive meeting. It is an ideal opportunity to learn, network with other families and meet experts in the field. Share Details Fun-Run-Walk October 2020 Oct 24, 2020, 7:00 AM EDT – Nov 01, 2020, 11:00 PM EST Virtual run/walk, location of your choice It's finally here: the first ever virtual global fun run/walk event to support Shwachman-Diamond Syndrome (SDS) research! www.SDSAlliance.org/steps Share Details Postponed. New Date TBD. SDSF Family Conference at Camp Sunshine (ME, USA) Jul 12, 2020, 2:00 PM EDT – Jul 16, 2020, 10:00 AM EDT Camp Sunshine, Cosco, ME, USA, Cosco, ME SDSF (SDS Foundation) hosts a 6-day session at Camp Sunshine every other summer for SDS families to meet with each other and meet and learn from the top SDS experts in North America. Share Details Paint with us! Rare Disease Day Fundraiser for SDS, Metro Boston Feb 29, 2020, 2:00 PM – 5:00 PM EST Painting with a Twist, North Andover, MA, 10 High St, North Andover, MA 01845, USA SDS Alliance partnered with Painting with a Twist in North Andover to host a painting event as a fundraiser. Share Details SDS Registry Family Day in Boston, MA, US Sep 15, 2019, 8:00 AM – 4:00 PM EDT Boston, MA, Harvard Medical School Joseph B Martin Center 77 Avenue Louis Pasteur NRB 133 Boston, MA 02155 Celebrating the SDS Registry's 10th anniversary! Please join us for a complimentary day of education, connection, and fun! - Hear updates from the SDS Registry - Learn about exciting research - Discover cutting-edge clinical trials for SDS - Connect with other SDS families Share Details

Resources for children to learn about and cope with Shwachman-Diamond Syndrome in fun and supportive ways Kids' Corner Presented by Ribo & Somi, the Ribosome Superheroes! Hello friends! This page is just for you, the kids in the SDS community. We have collected many fun videos and printables for you to learn about SDS, science, and the community. Have fun and keep on learning! Love, Ribo & Somi Downloadables &Printables Tip for parents: Do you have a kids' event coming up? A birthday party or a rare disease / SDS event at school? The Hero Kids in the Making Coloring Book and the Ribo & Somi Coloring Calendar are available printed and assembled. Check out the order links below. Allow at least three weeks for shipping and handling, or contact us for custom needs at connect@SDSAlliance.org . A coloring book with a lovely story written by an SDS dad and illustrated by an SDS child, to help replace fear of hospital and doctors' visits with fun, adventure, and imagination. Read more about how Elijah inspired his dad to write this story and how the coloring book came about, here . Download a printable PDF (English, letter size) version or order printed booklets, here . Other formats and printed copies are available upon request by emailing connect@sdsalliance.org . Please allow several weeks for printing and shipping. Now also in Spanish!!!! Download a printable PDF (Spanish, letter size) version or order printed booklets, here . Ribo & Somi's Coloring Calendar for coloring and learning We are seeking volunteers to help with translations into any languages not already done. New! The 2024 edition is available in English for download or in print, here: English (letter size) Other languages and formats are available by emailing connect@SDSAlliance.org Currently available: Español Français Magyarul Svenska Books From our friends at the Immune Deficiency Foundation, free download and/free hard copies available. Mixed Bag Videos Learn about DNA, genes, and chromosomes. This great video about DNA is also available in Spanish and Arabic. Learn about bone marrow, blood cells, and the immune system Learn about the digestive system, liver, and pancreas

We created a beautiful documentary film "Until There's a Cure" about the SDS journeys of four wonderful families, providing a new way for researchers and regulators to relate to and understand what it's like to live with SDS. The film had a significant impact at our EL-PFDD meeting. Now, we would like to expand the film by weaving in the story of a fifth SDS family, and shed light on what we as a community can achieve when we work together. Join us. SDS Documentary Film: Until There's a Cure We created a beautiful documentary film - titled "Until There's a Cure" - about the SDS journeys of four wonderful families, providing a new way for friends, families, researchers, and regulators to relate to and understand what it's like to live with SDS. Each story is unique, yet represents common experiences in the SDS community. The film had a significant impact at our EL-PFDD meeting . Now, we would like to expand the film by weaving in the story of a fifth SDS family, and shed light on what we as a community can achieve when we work together. We invite you to invest in this communication tool to inspire more people to help us accelerate our strategy and roadmap and reach our goal of clinical trials by 2030. Together, we can move mountains. To stay in the loop, subscribe to our mailing list . To invest in this work of art and to help advance our mission of giving SDS families more birthdays to celebrate, please consider making a gift today, or join our work as a monthly supporter. Thank you for your dedication to our community. For additional donation and fundraising tools, such as DAFs, Crypto, and personalized Fundraising Pages, please visit our donation page .

Living with Shwachman-Diamond Syndrome / SDS is hard. Find critical resources and community connections, here. This page is dedicated to parents and caregivers of SDS patients of any age. Parent & Caregiver Resources What is SDS? Talking to and Supporing Kids Parent and Caregiver Resources Financial Support Resources Connect: Peer Support & Communities The Science Behind SDS Participating in Research Podcasts about Rare Disease/SDS Talking to and supporting kids through the physical and mental challenges of SDS Talking to kids Explaining blood, bone marrow, and transplant This is an amazing education video published by our friends at the Fanconi Anemia Research Fund (FARF) about How to Talk to Children About Fanconi Anemia (FA). FA is a genetic bone marrow failure syndrome with many similarities to SDS, and most of the content of this video is directly applicable to the SDS community! It includes explanations about the blood, bone marrow, and transplant, and suggestions of HOW to talk to children about these topics. Ideas for supporting learning, cognitive, and behavioral challenges www.understood.org - A great resource to learn how to deal with executive functioning challenges and other types of learning differences. Useful for both caretakers, teachers, and people experiencing the challenges themselves. Here is an example of search results for executive functioning. Ideas for supporting children and their siblings Beads of courage Plus, check out our kids' corner with resources just for kids! Gene-Based Diagnosis 101: How to Successfully Navigate the Diagnostic Journey Toolkits by Global Genes Resources for parents and caregivers for themselves. (Put on your oxygen mask first). Parent resources Resources to deal with anticipatory grief and loss This resource sheet (PDF with links) and list with additional resources was put together by members of the Fanconi Anemia community and may be helpful to our SDS community as well. Sharing here with their permission. Inanacare : A great resource with webinars, blogs, and a podcast for caregivers. Their mission is to encourage, empower, and equip family caregivers with practical tools and supportive communities, so no caregiver does this alone. They have a free app, a podcast, and webinars as ways to support caregivers and provide practical resources. Connecting with SDS families in your area "who get it" Check out our peer-to-peer page Family planning discussions, including IVF We have a private Facebook group to support families going through IVF. Please contact us at connect@SDSAlliance.org to learn more. Financial and other support for medication and transporation Financial support Transportation Miracle Flights – Provides free domestic or international travel to U.S. facilities for medical treatment, second opinions, and follow-up for patients in need. Angel Flight – Arrange free air transportation for any legitimate, charitable, medically related need. This service is available to individuals, and healthcare organizations. Julia’s Wings – The Julia’s Wings Foundation (JWF) is a 501(c)(3) non-profit organization with the mission of providing assistance to families of children with the life threatening hematological disease General Health Well Foundation – Pedatric Assistance Fund Got Transition – Helps to improve the transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families. Healthcare advocacy resources for patients: These are some organizations that specialize in helping patients navigate the US healthcare system to help them get access to insurance, specialists, medications, services, etc. We have no first-hand experience with these organizations, so please use sound judgment as you engage with them. Bone Marrow/Stem Cell Transplant Be the Match (National Marrow Donor Program) – Nonprofit organizations dedicated to creating an opportunity for all patients to receive bone marrow or umbilical cord blood transplant when needed. Bone Marrow and Cancer Foundation – Patient aid program that provides coverage for many costs associated with bone marrow, stem cell or cord blood transplant. BMT InfoNet – The BMT InfoNet Patient Assistant Fund (PAF) assists patients and caregivers with living expenses during treatment. Children’s Organ Transplant Association (COTA) – Provides fundraising assistance for children & young adults needing bone marrow transplants. Also advocates for marrow, organ and tissue donation DKMS: We Delete Blood Cancer – A non-profit advocacy group that works to raise awareness of the need for donors for hematopoietic stem cell transplantation, which people with blood cancers need for treatment. Information on frequently used medication Clinical decision guide by AvoMD for physicians for pancreatic enzyme replacement therapy (PERT) - patients can point their provider to this resource to optimize their care. Provided by Mission:Cure . CREON: https://www.creoninfo.com Medication copay assistance programs (US) CREON On Course support program - offers copay assistance and sometimes provides ADEK vitamins and nutritional supplements. [US only, as far as we can tell] Zenpep Z-Save Patient support program - - offers copay assistance and sometimes provides ADEK vitamins and nutritional supplements. [US only, as far as we can tell] Additional resources List compiled by NORD Medication Copay Assistance Progams (US)

Members-only page to access recordings and resources of SDS-POPS, the Patient AdvOcacy and Partneting Summit. The first, global, virtual event designed to engage all stakeholders and provide meaningful education and networking opportunities to patients, scientist, medical providers, industry representatives and regulatory stakeholders. SDS POPS Global Patient Advocacy and Partnering Summit The only global, virtual meeting of its kind to provide patients, caregivers, scientists, physicians, and all other stakeholders with an opportunity to connect and discuss all things related to Shwachman-Diamond Syndrome research and advocacy. Provide feedback about POPS 2024 Recording 2024 Table of Contents with Timestamp 6:07 Session I: Patient Stories 6:35 Eszter Hars (SDS Alliance): Introduction of our latest paper as a guide through today's meeting: From Challenge to Opportunity: How Shwachman–Diamond Syndrome Became a Promising Target for Therapy Development . 9:18 Eszter Hars (SDS Alliance): EL-PFDD Externally Led Patient-Focused Drug Development Meeting in planning! 11:36 Joyce Fitz (Patient Advocate and SDS Alliance Youth Ambassador): My Story 23:20 SDS Film Project Introduction and the Premier of its Trailer! 27:24 Levi Gershkowitz ( Filmmaker, Living in the Light): About the making of the film 35:30 Meet the families from the film: A discussion with Kassi and Erika Thompson (sharing Elijah's story); and Amanda Jacobs (on behalf of Melvin and Addie), moderated by Ashley Ferreira (Community Engagement, SDS Alliance). 1:07:00 Session II: The COSMOS of Research 1:08:45 Juliane Mills (Worldwide Clinical Trials): An Introduction to the Clinical Trials 1:25:04 Eszter Hars (SDS Alliance): Where to find clinical trials, and what is Clinicaltrials.gov? 1:26:38 An example of drug repurposing and clinical trials: Mavorixafor by X4 Pharma 1:29:05 Dr. David Fajgenbaum (EveryCure): An AI-based systematic approach to finding drug repurposing candidates 1:36:56 Dr. Daniel Bauer (Boston Children's Hospital): An update and vision for Gene Therapy for Shwachman-Diamond Syndrome 1:51:41 Dr. Vanessa Merker (Harvard Medical School and Mass General Hospital): Qualitative Research and its Impact on Health Outcomes (and Drug Development) 2:08:24 Dr. Sharon Savage (NIH, NCI): What are Natural History Studies? Insights from Telomere Biology Disorders 2:26:43 Session III: SDS Alliance Collaborations for Impact 2:28:16 Dr. Eszter Hars (SDS Alliance) & Dr. Steve Murray (Jackson Laboratory): Humanized Mouse Model for Shwachman-Diamond Syndrome (AKA Mouse Project I): An Overview of the Rationale and Splicing; and an Update on the Progress to Date . 2:57:11 Dr. Eszter Hars (SDS Alliance): Brief Introduction to a new project to Develop an iPSC-based Chimeric Mouse Model for Shwachman-Diamond Syndrome (AKA Mouse Project II) 2:58:50 Dr. Eszter Hars (SDS Alliance): US ICD-10 code D61.02 for Shwachman-Diamond Syndrome and its Success within just 12 Months 3:03:30 Dr. Eszter Hars (SDS Alliance): Progress in Diagnostic Rate and Speed. Increased Access through Newborn Screening (Genomics England; GUARDIAN study) and free genetic testing resources (Visit https://www.sdsalliance.org/sds-testing ) 3:09:57 Melanie O'Leary (Rare Genomes Project, Broad Institute of MIT and Harvard): A collaboration with Shwachman-Diamond Syndrome to Support Diagnosis through Whole Genome Sequencing. More at https://www.sdsalliance.org/rare-genomes 3:19:35 Katie Russell (Broad Institute of MIT and Harvard): Estimating Genetic Prevalence using Large Datasets on Variants; EFL1 Genetic Prevalence Study 3:29:40 Ashley Thompson (SDS Alliance) and Grace Lynch (MGH, Genetic Counseling Program): SDS LENS Study (Exploring the Lived Experiences, Needs, and Stories of SDS Patients and Caregivers) 3:39:10 Eszter Hars (SDS Alliance): Summary of opportunities to get involved! Bonus: SDS-GPS 3:44:14 Eszter hars (SDS Alliance): SDS-GPS (Global Patient Survey and Collaboration Platform) : Background, Overview, and Results! NOW OPEN FOR ENROLLMENT! Visit www.sdsalliance.org/sds-gps 3:55:48 Alexis Morgan (Geisinger): An Introduction to ClinGen, ClinVar, and Genome Connect, and our collaboration with Shwachman-Diamond Syndrome Alliance 4:09:30 Eszter Hars (SDS Alliance): What have we learned through SDS-GPS so far? A few highlights. Resources The full article: From Challenge to Opportunity: How Shwachman–Diamond Syndrome Became a Promising Target for Therapy Development Free genetic testing resources: https://www.sdsalliance.org/sds-testing Rare Genomes Project: https://www.sdsalliance.org/rare-genomes Probably Genetic: https://www.sdsalliance.org/probably-genetic Mouse Model I Kickoff Meeting Video: SDS Science SPOTLIGHT - The Humanized... More videos about SDS Science and the Key Concepts on our Science Page: https://www.sdsalliance.org/science Dr. Dan Bauer's full-length video on Gene Therapy for SDS Amy Doyle's talk about the experience of siblings of SDS patients and slide deck X4 Pharma's 4Ward Study Information: Website and Handout (PDF) Partners and Sponsors Our programs, including educational programs such as SDS POPS, are made possible through support from our donors, partners, and sponsors. Thank you for making this work possible! If you or your company would like to support our work through Sponsorships or Donations, please reach out to our development team at gifts@sdsalliance.org . 2023 Recording 2023 Table of Contents with Timestamp This was the first-ever global virtual patient summit for Shwachman-Diamond Syndrome, free to attend for the whole community. Welcome and Introduction 00:00 Welcome and Patient Stories: Dr. Eszter Hars, President and CEO, SDS Alliance, and mother to a child with SDS Patient Stories 10:48 Patient Stories: Gracie Van Brunt , Singer/Songwriter/Topliner, SDS Patient 24:04 Patient panel: Lisa Superina , Mother of two young kids with SDS 34:13 Patient Panel: Julie Martindale , Mother of a child with SDS, post-transplant Science Session 49:58 Science Session: Reflections Cambridge Congress 1:08:20 Therapeutic Targets 1:13:18 Therapeutic Targets: DNA and Gene Therapy: Dr. Christian Brendel (Boston Children's Hospital) 1:26:54 Therapeutic Targets: RNA-based and targeting Therapy: Dr. Valentino Bezzerri (University Hospital of Verona, Italy) 1:43:51 Therapeutic Targets: Protein targeting with small molecules: Dr. Alan Warren (Cambridge, UK) - recording of an earlier presentation Patient Voice and Data for Impact 2:11:19 Patient Voice and Data for Impact (Introduction by Eszter Hars, SDS Alliance) 2:19:49 Patient Voice and Data for Impact: Dr. Alexandre Betourne, Executive Director, RDCA-DAP Closing Remarks 2:48:53 Closing remarks: Dr. Eszter Hars Resources mentioned in the meeting SDS and Science learning resources for patients and families: https://www.sdsalliance.org/understan... Video about surveillance by Dr. Akiko Shimamura and Dr. Kas Myers the SDS Registry: https://www.sdsregistry.org/physician... The draft consensus guidelines from 2011 and other important references: https://www.sdsalliance.org/diagnosti... Webinar on GUIDs and patient identifiers hosted by RDCA-DAP: GUIDs and De-Identification Tools for... Joining the Global SDS Alliance Global Network: Join button on top of https://www.SDSAlliance.org To learn more about SDS-GPS and/or our cell biobank program: https://www.SDSAlliance.org/sds-gps To support our work, visit https://www.SDSAlliance.org/donate More information about our mouse project: https://www.sdsalliance.org/post/sds-... https://www.sdsalliance.org/post/mous... https://www.sdsalliance.org/post/mous... For professionals, see a list of available research tools here: https://www.sdsalliance.org/research-...