# Project8p ## Posts - [PROJECT 8p HOLIDAY GIFT GUIDE](https://project8p.org/project-8p-holiday-gift-guide/): If holiday shopping is on your mind, then we have a fabulous resource for you! I don’t know about you, but shopping for my 8p hero has sometimes stumped me… - [RICHIE’S STORY](https://project8p.org/richies-story/): RICHIE’S STORY Richie’s story has so many moving parts. He has affected so many people and if you asked all of us close to him to write this, you would… - [HOW TO QUALIFY FOR SOCIAL SECURITY DISABILITY BENEFITS WITH AN 8P DISORDER](https://project8p.org/how-to-qualify-for-social-security-disability-benefits-with-an-8p-disorder/): How To Qualify For Social Security Disability Benefits With An 8P Disorder Anyone who has worked in the past but develops medical problems that will make it impossible for them… - [GROWING WITH THE GIFT OF SHARING](https://project8p.org/growing-with-the-gift-of-sharing/): GROWING WITH THE GIFT OF SHARING Story sharing is such a valuable way to share common experiences, learn, and develop, and can also be a very cathartic way to… - [PROJECT 8P IS A MEMBER OF COMBINEDBRAIN](https://project8p.org/project-8p-is-a-member-of-combinedbrain/): Project 8p is a member of COMBINEDbrain a non-profit consortium of 25 patient-advocacy groups, each representing a different rare genetic neurodevelopmental disorder. COMBINEDBrain’s mission is to speed clinical trial readiness… - [UNDERSTANDING TELEHEALTH SERVICES AS A PARENT OF SPECIAL NEEDS CHILDREN](https://project8p.org/understanding-telehealth-services-as-a-parent-of-special-needs-children/): When it comes to healthcare for our children, parents are on the front lines 24/7. Parents with special needs children are warriors. I am the mother of one of these… - [TRAVEL TIPS FOR PARENTS WITH SPECIAL NEEDS](https://project8p.org/travel-tips-for-parents-with-special-needs/): Travel can be a stressful experience. This can be especially true when traveling with a special needs child. My husband, two kids, and I are a military family; we live… - [NATIONAL MUSIC MONTH: MUSIC THERAPY AND 8P HEROES](https://project8p.org/national-music-month-music-therapy-and-8p-heroes/): By: Brad Swail, 8p Father based in Austin, TX March is National Music Month in the United States, and what better way to celebrate than by providing a little insight… - [GOOGLE DOODLE KIDS COMPETITION](https://project8p.org/google-doodle-kids-competition/): My sister is 5 years old and she can’t walk or talk but she tries so hard to. She has different therapists that come home to help her and she… ## Pages - [Onya Portal - Terms and Conditions](https://project8p.org/onya-portal-terms-and-conditions/) - [Onya Portal - Privacy Policy](https://project8p.org/onya-portal-privacy-policy/) - [NeuroRare Open Science Challenge](https://project8p.org/neurorare-open-science-challenge/): NeuroPrecision Open Science Challenge Facebook-f Instagram Linkedin-in Youtube X-twitter 🧬 From Signals to Solutions NeuroPrecision Open Science Challenge Hosted by Project 8p Foundation Project 8p is opening our multi-omics natural history dataset—plus curated external control datasets for benchmarking—to accelerate discovery in neurodevelopmental rare disease. Explore and analyze deeply phenotyped cohorts inside our analytics-ready workspace in the Onya Portal, a platform built in a mission driven way to foster collaboration and impact. Challenge Overview This Open Science Challenge invites you to explore de-identified data: Whole genome sequencing Transcriptomics & methylomics Structural MRI  Microbiome Mitochondrial function Blood-based markers of inflammation and neurodegeneration […] - [Registration Form](https://project8p.org/registration-form/): Loading… - [8 Steps For New Members](https://project8p.org/8-steps-for-new-members/): At Project 8p, we understand that receiving a Chromosome 8p diagnosis can be an emotional and overwhelming experience. - [8000 Steps for 8p](https://project8p.org/8000-steps-for-8p/): An awareness and fundraising event to accelerate treatments for rare Chromosome 8p Disorders. Walk, run, stride, or ride in honor of 8p heroes around the globe. - [Career Opportunities](https://project8p.org/career-opportunities/): Welcome to Project 8p Foundation, where everyday brings new opportunities to make a profound impact. - [STEP 4: My Hero Initiative Complementary Studies](https://project8p.org/step-4-my-hero-initiative-complementary-studies/): The My Hero Initiative Complementary Studies advance our understanding of Chromosome 8p Disorders. - [Organ Tissue Donation](https://project8p.org/organ-tissue-donation/): Project 8p Foundation’s partnership with Autism BrainNet does not mean that anyone anticipates your 8p Hero will experience a premature passing. - [Privacy Policy](https://project8p.org/privacy-policy/): The information on this website is provided for informational purposes only. It does not constitute medical advice, and should not be used in place of consultation with appropriate medical professionals. - [Patient leadership board](https://project8p.org/leadership-team-patient-leadership-board/): Caregiver Champions are dedicated parents and family members of 8p heroes who contribute their time, insight, and energy to support Project 8p’s mission. - [Medical and scientific advisory board](https://project8p.org/leadership-team-medical-and-scientific-advisory-board/): Dr. Scott Demarest is an assistant professor in the Department of Pediatrics, Division of Neurology and the Adult & Child Consortium for Health Outcomes Research and Delivery Science. - [Board of Directors](https://project8p.org/leadership-team-board-of-director/): The Board of Directors has general oversight, fiduciary, program development and ambassadorial responsibilities. - [Management​](https://project8p.org/meet-the-team/): Meet The Team - [2019 NYC 1ST-EVER CONFERENCE](https://project8p.org/2019-nyc-1st-ever-conference-2/): For the first time in 2019, Project 8p convened a conference on chromosome 8p disorders for researchers and families. - [LOCAL RESOURCES FOR THE 2022 PROJECT 8P FAMILY RETREAT](https://project8p.org/local-resources-for-the-2022-project-8p-family-retreat/): The purpose of this retreat is to provide time for us to hang out as families and get to know another one and to give families the opportunity to be seen at the Neurogenetic Multidisciplinary Clinic - [2020 8P VIRTUAL RETREAT](https://project8p.org/2020-8p-virtual-retreat-2/): It was our first Virtual Conference and a success! Over 120 people registered to share their experiences and learn from each other. - [2021 PROJECT 8P CONFERENCE](https://project8p.org/2021-project-8p-conference-2/): We are also asking families to join us in the Conference Facebook page for updates and news. - [2022 PROJECT 8P FAMILY RETREAT](https://project8p.org/2022-project-8p-family-retreat/): Welcome 8p Families. Please join us August 5-8, 2022 to celebrate our 8p heroes, meet families, and spend time together. - [Apply For Funding](https://project8p.org/apply-for-funding/): Project 8p has a grant program that accepts unsolicited LOI’s here as well as a publicly posted general Request for Proposal (RFP) that provides detail regarding a general area of interest, sets timelines for review and approval, and uses an expert review panel to make final grant decisions. - [Donate Crypto](https://project8p.org/donatecrypto/): Make a huge impact in children’s lives that want to talk and walk. - [PLANNED AND/OR DEFERRED GIFTS](https://project8p.org/planned-and-or-deferred-gifts/): The simplest and perhaps most common of all planned giving methods is the bequest. - [OUTRIGHT GIFTS](https://project8p.org/outright-gifts/): A donor may make a gift of cash (via check, credit card and other online means) stock or real estate to Project 8p in any amount or of any value. - [Project 8p Faster](https://project8p.org/project-8p-faster/): Through challenges to better understand and treat abnormalities to chromosome 8p, inspirational donors will transform science and human health at large. - [Ways To Give](https://project8p.org/ways-to-give/): Over 550 children with 8p throughout the world conquer daily challenges most of us take for granted, while averaging 125 hours of therapy and at least 1 doctor visit every month. - [TeleEcho Model For Professionals](https://project8p.org/teleecho-model-for-professionals/): TeleEcho Model For Professionals Coming Soon… https://project8p.org/wp-content/uploads/2023/07/Doodly-Video-Healthcare-Providers.mp4 We are building a network of 8p providers! This is a crucial step towards improving the lives of our 8p heroes.  We welcome providers of any speciality.  What is an ECHO? Moving Knowledge, Not People Echo bridges the care gap between community professionals, patients and their families. Project 8p has joined forces with ECHO Autism to facilitate remote learning and collaboration amongst a worldwide network of 8p providers. Leveraging the capabilities of ECHO, Project 8p will harness the power of technology to disseminate knowledge, empowering professionals in the 8p community to provide high-quality […] - [Clinic Publications](https://project8p.org/clinic-publications/): Some of our publications - [My Hero Initiative](https://project8p.org/my-hero-initiative/): No one understands 8p heroes better than themselves and the ones who love them most. The My Hero Initiative invites families to share their 8p hero’s journey and add their piece to the Chromosome 8p Puzzle. - [STEP 3: Multidisciplinary Neurogenetic Clinic](https://project8p.org/step-3-multidisciplinary-neurogenetic-clinic/): For the first time, Project 8p has led the launch to change the model of how clinical care can be organized with data to inform research and potential therapies, while serving bedside for a standard of care that does not exist. - [STEP 2: RARE-X 8P Data Collection Platform](https://project8p.org/step-2-rare-x-8p-data-collection-platform/): Rare-X was created to accelerate rare disease research, treatments, and cures by removing barriers for data collection and sharing. - [Step 1: Chromosome 8p Registry & Biorepository](https://project8p.org/step-1-chromosome-8p-registry-biorepository/): The Chromosome 8p Registry is a secure data collection platform for individuals (and immediate biologic family members) with chromosome 8p rearrangements. - [Take Action](https://project8p.org/take-action/): Our volunteers are critical to our mission. There are many creative ways you can support our community. - [8p Symptoms](https://project8p.org/8p-symptoms/): 8p Symptoms “What is our diagnosis?” When a doctor asks us, “what is your diagnosis?”, they should be asking “how many diagnoses do you have?” because we have too many to keep track of.  The majority of us have moderate to severe developmental delays among other health complications including heart defects. The impact of 8p conditions varies between individuals. Symptoms include: Sometimes our brain mixes up signals when we want to bring food to our mouth and misfires — and the food ends up on our heads! And even this takes 10x more energy for us! We are often tired […] - [Our impact old](https://project8p.org/our-impact-old/): Our Impact Facebook-f Twitter Linkedin-in Youtube Instagram Wpforms Envelope Our Impact four Main Pillars Deliver a High Quality of Standard Care Accelerate Research for 8p Related Disorders Partner with Global Difference Makers Empower Community Created the first-ever global patient registry with authentic patient information critical to clinical trials. Presently 550 children have been diagnosed, but it is estimated to be 500,000+ based on incidence rates.* ( *footnote) Galvanized and inspired a global network of renowned researchers, enlightened doctors and credible medical centers; Designed systems to promoted open science, accelerate knowledge transfer; and incentive collaboration—all core to the organization’s value system; […] - [Care Tools](https://project8p.org/care-tools/): Care Tools Printable Tri-Fold Information to share with your family members, doctors, donors, any interested parties View Brochure Chromosome 8p Syndromes Clinical Presentation and Management Guidelines View in English View the Community Voice Report by Trend View Report French Standard of Care Doc View in English View in French USA State Resource Guide January 2022 View PDF View PDF Connect: Your Resource for Active Medical Grant View PDF Explore Grants Authored by 8p Parents Chromosome Kids Like Me  Annette Fournier For the Love of Our Children – True Stories of Hope and Healing Rose-Anne Partridge Bundle of Joy: A Devotional […] - [Genotype Phenotype Study](https://project8p.org/genotype-phenotype-study/): Genotype Phenotype Study Facebook-f Twitter Linkedin-in Youtube Instagram Wpforms Envelope Dr. Wendy Chung on Project 8p – Chromosome 8p disorders and deletion The goal of this study is to identify genes that convey susceptibility to major symptoms in patients with chromosome 8p deletions and duplications. https://www.youtube.com/watch?v=QZL0tAGUmTc Columbia Univ Study  Clinical And Genomic Characterization Of 8p Cytogenomic Disorders Okur V, Hamm L, Kavus H, Mebane C, Robinson S, Levy B, Chung WK. Genet Med. 2021 Dec;23(12):2342-2351. doi: 10.1038/s41436-021-01270-2. Epub 2021 Jul 19.PMID: 34282301 Deletion 8p_distal 14 protein-coding genes within the commonly deleted interval. Only three genes within this interval, DLGAP2, CSMD1 (2 […] - [Mission & Vision](https://project8p.org/mission-vision/): Mission, Vision & Core Values Mission To empower a unified community for chromosome 8p heroes for a meaningful life today while accelerating treatments for tomorrow. We invite scientists, medical experts, rare disease organizations, and industry to collaborate with us to increase our chances for a healthy life.   A building block of positive change is to make available  knowledge and resources and foster economies of scale.  The possibilities of genomic medicine are only achievable with a strong community who advocates together and in turn can influence and generate involvement from scientists, researchers, biotech, pharma, and healthcare industries. Vision Cure genetic brain […] - [Letter From The Founder](https://project8p.org/letter-from-the-founder/): Letter from the founder Bina Maniar Founder & CEO My daughter beams with light and gives hugs to everyone around her, from a stranger to her brother, so long as she senses positivity. Even all of her specialists (over a dozen!) receive a huge embrace with a cheek to-cheek-smile from her. She is smart, and she captivates those around her. She was born with what appeared to be healthy, except for a rare genetic mutation in the 8th chromosome. Some of her genes are missing, some are duplicated, and some are flipped around. And nobody has a clue as to […] - [Blog](https://project8p.org/blog/) - [Quarterly updates](https://project8p.org/quarterly-updates/): Quarterly Updates For Science & Research - [Publication](https://project8p.org/publication/): The scientific or research articles below are from publications or journals that are relevant for Chromosome 8p disorders. - [My Hero Initiative Old](https://project8p.org/my-hero-initiative-old/): My Hero Initiative Facebook-f Twitter Linkedin-in Youtube Instagram Wpforms Envelope What Is The My Hero Initiative? Why was the My Hero Initiative formed? How Can I participate? Chromosome 8p Registry & Biorepository Rare-X 8p Data Collection Platform Multidisciplinary Neurogenetics Clinic What is a natural history study? Step 1: Chromosome 8p Registry & Biorepository Enrollment Instructions Chromosome 8P Registry FAQ’S Step 2: Rare-X 8p Data Collection Platform Enrollment Instructions Rare-X 8p Data Collection Platform FAQ’S Step 3: Multidisciplinary Neurogenetics Clinic What is the My Hero Initiative ? The My Hero Initiative was created by Project 8p to support our patient driven […] - [Home](https://project8p.org/): 1 in 10,000 children with 8p throughout the world conquer daily challenges most of us take for granted, while averaging 125 hours of therapy and at least 1 doctor visit every month. - [Financials](https://project8p.org/financials/): Financials We are committed to remaining true to our mission, ensuring transparency and providing the greatest impact to the chromosome 8p community. Please see our annual 990 filings to the IRS  2024 Filing 2023 Filing 2022 Filing 2021 Filing 2020 Filing 2019 Filing - [Contact Us](https://project8p.org/contact-us/): Contact Us Facebook-f Twitter Linkedin-in Youtube Instagram Wpforms Envelope Email: info@project8p.org Call: 717-715-7285 Address: Project 8p Foundation, 787 Seventh Avenue – 31st Floor, New York, NY 10019 - [News press](https://project8p.org/news-press-page/): Some of our News - [Sponsors And Grantors](https://project8p.org/sponsors-and-grantors/): Sponsors And Grantors We Are Not Alone, Thanks To You. Project 8p has had support from our generous corporate sponsors and grantors. We are immensely grateful to them. Please join the cause and continue to be by our side on this very important mission to help 8p heroes and families enjoy a meaningful life without the financial distress of living with a neurological rare disease. I’m Interested In Sponsoring Project 8p Amazon Web Services Pariveda Comend Google JP Morgan Chase & Co. Fitch Ratings Chan Zuckerberg Initiative Alaska Airlines Gene D Health Company Ameriprise Financial Spectrum Net App SAGE VitaHealth […] - [Join The Cause](https://project8p.org/join-the-cause/): Unless someone like you cares a whole awful lot, nothing is going to get better. It's not. - [For Volunteers](https://project8p.org/for-volunteers/): For Volunteers Facebook-f Twitter Linkedin-in Youtube Instagram Wpforms Envelope For Volunteers Our volunteers are so important to our mission and are contributing in creative ways to ensure we support our community.If you have an idea no matter the subject or scale, but could help Project 8p, please do not hesitate to send us a message. Any contribution makes a difference. Volunteer Here - [Family Friendly Research Updates](https://project8p.org/family-friendly-research-updates/): Some of our Family Friendly Research Updates - [2021 project 8P conference](https://project8p.org/2021-project-8p-conference/): Welcome to the International Family Conference July 7th – 9th, 2021 - [Local Assistance Program](https://project8p.org/local-assistance-program/): As a member of The Child Neurology Foundation, Project 8p has partnered with Unite Us, the nation’s leading technology company connecting health and social care. - [Rare Disease Facts](https://project8p.org/rare-disease-facts/): Rare Disease Facts What is a RARE DISEASE? In the Unites States, 25 million people suffer from rare disease.Globally, close to 400 million people suffer from a rare disease. Number of rare diseases: 10,000+ 1 in 10 people will suffer from a rare disease at some point in your life 1 in 2 Rare Diseases Don’t Have a Foundation or Research Support Group 1 in 2 Patients Diagnosed with a Rare Disease is a Child 8 in 10 Rare Diseases are Caused by a Faulty Gene 3 of 10 Children with a Rare Disease Won’t Live to See Their 5th […] - [Meet The Heroes](https://project8p.org/meet-the-heroes/): Meet The Heroes We are a group of over 550 8p heroes that live all over the world and come in different shapes and sizes. Despite the differences, Chromosome 8p shares many similarities. We are all hard working individuals that average 1,500 hours of therapy a year and at least 1 doctor visit every month. Just like most people, we deserve to enjoy every opportunity that life has to offer. And like superheroes always do, we seek victory as we try to conquer our daily challenges and end our day with a smile as we find the joy in knowing […] - [8p Genetics](https://project8p.org/8p-genetics/): Chromosome 8p is a rare genetic condition with approximately 1 in 10,000 patients around the world and counting. - [Commission On Novel Tech For Neuro CNVs](https://project8p.org/commission-on-novel-tech-for-neuro-cnvs/): Commission on Novel Technologies for Neurodevelopment CNVs In the middle of the Image Bina shah, Project 8p Foundation bina@project8p.org On the right side of the image Vanessa Vogel Farley, Global Genes andDup15Q Alliance vanessa.vogelfarley@globalgenes.org  On the left side of the image Yssa DeWoody,Ring 14USA yssa@ring14usa.org Yssa DeWoody,Ring 14USA yssa@ring14usa.org Bina shah, Project 8p Foundation bina@project8p.org Vanessa Vogel Farley, Global Genes andDup15Q Alliance vanessa.vogelfarley@globalgenes.org  Mission Establish a patient-led Commission to rapidly tackle scientific and financial resources collectively to prioritize treatment for those living with neurodevelopmental chromosome disorders. Vision Advance the field of technological discovery for treatment of neurodevelopmental disorders with a […] - [Researchers Roadmap](https://project8p.org/researchers-roadmap/): Check out our Researchers Roadmap - [Research Opportunities](https://project8p.org/research-opportunities/): Data sharing is essential for expedited translation of research results into knowledge, products, and procedures to improve human health. - [Commission On Novel Technologies For Neurodevelopmental CNVS](https://project8p.org/commission-on-novel-technologies-for-neurodevelopmental-cnvs/): Commission On Novel Technologies For Neurodevelopmental CNVS Project 8p is leading an important endeavor to establish a Commission with disorders that are similar to ours. Mission To establish a Commission that is a patient-driven collaborative group of stakeholders to advance novel technologies to treat people with neurodevelopmental diseases with complex copy number variants/large chromosome anomalies. Learn More Mission Patients as partners to collectively understand disease and remedies under the commonality of neurodevelopmental large chromosomal variations open and creative brainstorming to drive innovative approaches Culture of trust and respect Pro-Active participation and belief that a community approach gets us to the […] - [Chromosome 8p Registry & Biorepository](https://project8p.org/chromosome-8p-registry-biorepository/): Chromosome 8p Registry & Biorepository Facebook-f Twitter Linkedin-in Youtube Instagram Wpforms Envelope Data sharing is essential for expedited translation of research results into knowledge, products, and procedures to improve human health. — National Institute of Health Together Towards Treatment Annual 2022 Update or Registry 2.0. As this study is to better understand the disease over time, it requires improvements, updates to the protocol, and reconsenting. This is intentional to be certain that you understand participation on an ongoing basis and review your information to ensure it is correct and not out of date. RETURNING REGISTRY USER Existing Users – Returning […] - [About Project 8P](https://project8p.org/about-project-8p/): About project 8P Facebook-f Twitter Linkedin-in Youtube Instagram Wpforms Envelope Project 8p Foundation is a 501(c)(3) nonprofit organization that is researching 8p disorders to find treatment options and give meaningful answers to those affected and their families. We are patient-led. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment. We are living in the age of scientific discovery. With a strong network of companies and organizations around the world that are partnering together, rare diseases are being diagnoses and therapies are being developed to improve and save lives. While there are many obstacles […] - [Job Posts](https://project8p.org/job-posts/): While we are a new organization looking to grow rapidly, we strongly encourage all candidates to apply by contacting us about open positions. - [Founder's story](https://project8p.org/founders-story/): Founder’s story Facebook-f Instagram Linkedin-in Youtube X-twitter Dear Friends, My daughter beams with light and gives hugs to everyone around her, from a stranger to her brother, so long as she senses positivity. Even all of her specialists (over a dozen!) receive a huge embrace with a cheek to-cheek-smile from her. She is smart, and she captivates those around her She was born with what appeared to be healthy, except for a rare genetic mutation in the 8th chromosome. Some of her genes are missing, some are duplicated, and some are flipped around. And nobody has a clue as to […] - [Alliances & Partners](https://project8p.org/alliances-partners/): Alliances & Partners Alliances France La Maison 8p is the first French association entirely dedicated to families affected by changes to the eighth chromosome. Spain ASDID, the first Spanish association, entirely dedicated to families affected by genetic changes to the eighth chromosome. Ongoing research project. United States Project 8p, based in New York City, conducts scientific research and maintains a registry of patients with genetic changes to the eighth chromosome. UK & The Republic Of Ireland Extended community of families affected by genetic changes to the eighth chromosome, of which a mother is a spokesperson and educates the general public. […] - [2019 NYC 1ST-EVER CONFERENCE](https://project8p.org/2019-nyc-1st-ever-conference/): 2019 NYC 1st – ever conference Facebook-f Twitter Linkedin-in Youtube Instagram Wpforms Envelope 2019 NYC 1st – ever conference Conference Date: August 8, 2022 at 12:00 pm 1st Scientific & Family Conference in 2019 For the first time in 2019, Project 8p convened a conference on chromosome 8p disorders for researchers and families. The goals of the conference helped to begin building a strong community of researchers and families and determine research and treatment priorities. Thursday June 27, 2019 Welcome Dinner Photo Gallery Friday June 28, 2019 Photo Gallery Conference Presentations and Videos https://www.youtube.com/watch?v=XHOmBV4js_Ehttps://www.youtube.com/watch?v=XHOmBV4js_Ehttps://www.youtube.com/watch?v=XHOmBV4js_Ehttps://www.youtube.com/watch?v=XHOmBV4js_E Friday June 28, 2019 Photo Gallery […] - [2020 8P Virtual Retreat](https://project8p.org/2020-8p-virtual-retreat/): 2020 8P Virtual Retreat Facebook-f Twitter Linkedin-in Youtube Instagram Wpforms Envelope 2020 Project 8p Virtual Retreat Conference Date: August 8, 2022 at 12:00 pm Keynote Speaker: Stephanie Decker In March of 2012, a tornado ripped through the town of Henryville, Indiana. Stephanie Decker, a 37-year-old mother, found herself in a life-altering moment. As her house began to disintegrate around her, she shielded her two young children with her body. Her dream home fell in, crushing her legs, but because of her heroic actions, Stephanie’s children were amazingly unscathed. It was a miracle that she even survived and made it to […] - [Conferences](https://project8p.org/conferences/): Conferences 2024 Family & Science Conference View Page 2022 Project 8p Family Retreat View Page 2021 Project 8p Conference View Page 2020 Project 8p Virtual Retreat View Page 2019 Inaugural Conference View Page - [2020 Project 8p Family Retreat](https://project8p.org/2020-project-8p-family-retreat/): 2020 Project 8p Family Retreat Facebook-f Twitter Linkedin-in Youtube Instagram Wpforms Envelope 2022 Project 8p Family Retreat Conference Date: August 8, 2022 at 12:00 pm 2022 Project 8p Family RetreatAugust 5-8Aurora Colorado Welcome 8p Families. Please join us August 5-8, 2022 to celebrate our 8p heroes, meet families, and spend time together. This event is open to 8p Heroes and their family. Please register below to let us know who is attending. Event Details - [Chromosome 101](https://project8p.org/chromosome-101/): Chromosome 101 Scientists estimate that on average, a human being has 37.2 trillion cells. In every cell, there is a nucleus (except for red blood cells) which contains identical sets of chromosomes found in pairs. Pairs of human chromosomes are numbered from 1 through 22, with an unequal 23rd pair of X and Y chromosomes for males and two X chromosomes for females. Chromosomes carry the genetic characteristics of each individual, collectively called the human genome. Each chromosome is a flexible structure made of material called DNA, which is one long molecule that appear like tightly coiled strands. The coding […] - [Providers](https://project8p.org/providers/) - [Join Cause](https://project8p.org/join-cause/) - [Our Impact](https://project8p.org/our-impact/): Our Impact Deliver a High Quality of Standard Care Partner with GlobalDifference Makers Accelerate Research For 8p Related Disorders Empower Community 5 year Strategic Plan Download Project 8p Achievements Created the first-ever global patient registry with patient information for clinical-trial readiness. Presently 550 children have been diagnosed – Estimated to be 500,000+ based on prevalence rates. Galvanized and inspired a global network of renowned researchers, enlightened doctors and credible medical centers. Funded top research investigators focused on the most promising outcomes and breakthrough treatments. Designed systems to promote Open Science, accelerate knowledge transfer; and incentivize collaboration—all core to our value […] - [For Families](https://project8p.org/for-families/) - [Events](https://project8p.org/events/): Events Chromosome 8p Day Celebrate August 8th annually for Chromosome 8p Day and help us raise awareness and Take Action Read More 8000 Steps for 8p Join Project 8p Foundation every August for our annual 8,000 Steps for 8p. An awareness and fundraising event to accelerate treatments for rare Chromosome 8p Disorders. Walk, run, stride, or ride in honor of 8p heroes around the globe. All funds raised support Project 8p’s mission to empower a unified community for chromosome 8p heroes for a meaningful life today while accelerating treatments for tomorrow. Sign Up Here https://project8p.org/wp-content/uploads/2023/08/8000-Steps.mp4 Twig & Berries Golf for […] [comment]: # (Generated by Hostinger Tools Plugin)