We are incredibly excited to announce the Chan Zuckerberg Initiative has chosen Channeling Hope Foundation for cycle 3 of the competitive Rare As One program. This 5-year $800,000 grant recognizes CHF as a catalyst for change in NALCN channelsome research. As part of the CZI Rare As One Network, patient-led organizations are developing and launching collaborative research networks in partnership with clinicians and scientists. The program provides networking, tools, and capacity-building support and training. We are excited that this funding will be used to build organization and research capacity. Read More here: https://lnkd.in/dHq9h2tz
Channeling Hope Foundation
非盈利组织
A community driven to advance care and develop treatments for children affected by NALCN-related diseases
关于我们
The Channeling Hope Foundation was started by parents of children with NALCN genetic mutations who connected over a shared hope for a world free of NALCN channel diseases. NALCN (Sodium Leak Channel) diseases are a group of rare genetic disorders that result from mutations in the NALCN gene and associated proteins (UNC79, UNC80, FAM155A). NALCN plays a crucial role in regulating the electrical activity of neurons and other cells. Supported by a global network of NALCN scientists and a small but mighty community of affected families, the Channeling Hope Foundation was established in 2023 to work together to advance care and develop treatments for children affected by NALCN genetic disorders.
- 网站
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channelinghope.org
Channeling Hope Foundation的外部链接
- 所属行业
- 非盈利组织
- 规模
- 1 人
- 类型
- 非营利机构
- 创立
- 2023
Channeling Hope Foundation员工
动态
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To bring attention to the amazing gift this family is giving to the research community, Channeling Hope askes you to share this story with your contacts! You can also help with this journey by donating here: https://lnkd.in/g2Eyr5aH
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Breaking: The Accelerating Kids’ Access to Care Act was just passed out of committee! This is huge progress for the #RareDisease community and will help kids with complex medical conditions seek care across state lines. Urge your Representative to support the #AKAC today, here: https://lnkd.in/epiBb_Mq Thank you to The Leukemia & Lymphoma Society and Children’s Hospital Association for co-leading a letter of support for this bill with NORD last year, which was signed by 215 patient organizations. We will continue to champion this legislation together.
Take Action - National Organization for Rare Disorders
rarediseases.org
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We celebrate Wendy Chung, the RARE Champion in Health Equity by Global Genes! Her dedication to advancing care and awareness for rare diseases is truly inspiring. On Rare Disease Day she said "Rare diseases may be individually rare but they are collectively common. There are millions of people living with rare diseases. Today and every day, doctors like me care for rare, and it’s our privilege." These words resonate with us at the Channeling Hope Foundation. Wendy Chung is a champion for all our rare disease patients and will continue to shine a light on rare diseases. ???? #HealthEquity #GlobalGenes #RAREChampion
?? Exciting News! ?? We are thrilled to announce that Dr. Wendy Chung, Principal Investigator of Simons Searchlight, has been nominated as a RARE Champion in Health Equity by Global Genes! ?? Global Genes, a leading patient advocacy organization in the rare disease space, recognizes individuals for their innovative contributions to research, programming, and advocacy. Dr. Chung’s dedication and impact in the rare disease community have earned her this prestigious nomination. ?? Congratulations to all the nominees! ?? To see the full list of inspiring individuals, visit: https://lnkd.in/eniZwCG5 Stay tuned for more updates, and let's celebrate Dr. Chung's incredible work together! ?? #RAREChampions #HealthEquity #RareDisease #GlobalGenes #Advocacy #Research #Innovation #SimonsSearchlight
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?? Exciting news! ?? Rare Disease International has been admitted into relations with the World Health Organization! This milestone signifies a crucial step towards health equity for the millions living with rare diseases worldwide. Collectively, rare diseases may seem uncommon, but their impact is profound, affecting millions globally. Let's continue to raise awareness, advocate for research, and support those living with rare diseases on their journey towards a healthier, more inclusive world. ?? #RareDisease #HealthEquity #WorldHealthOrganization #RareButNotRare"
Exciting news! Today in Geneva, RDI was admitted into official relations with the #WHO. This status gives RDI new opportunities to contribute expertise, insights and perspectives from the rare disease community to the development of policies and strategies within the WHO framework by increasing awareness on rare diseases and their visibility, identifying needs of the global rare disease community, and mapping available technical resources in rare diseases. It underscores the importance of raising the voices of those impacted by #rarediseases and reinforces the principles of patient-centred healthcare within the global health agenda.????????? The official relations status will empower RDI to collaborate even more productively with the WHO and better assist Member States and the rare disease community in enhancing policies and initiatives for #PLWRD and promote their access to healthcare and services at the global, regional and national levels. It will help strengthen the global response to rare diseases, enhance healthcare outcomes, and foster a more inclusive and equitable health landscape for all. Read the full statement here: https://lnkd.in/dNuwvMGQ
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This week our team has been busy welcoming Class 10 to the RARE-X Platform! As we reflect on collaborative efforts of the RARE-X team, we are thrilled to be hitting a huge milestone with our 10th class. Not only that, but collaborating with this incoming group brings the RARE-X Data Collection Program to a total of 115 Patient Advocacy Groups! Our team is working hard to ensure our groups are getting the most out of this collaborative effort to drive forward data collection in rare diseases. We are excited to be collaborating with 8 new patient advocacy groups as they start their data collection programs. ? Welcome All! To learn more about joining RARE-X please contact our community engagement team at [email protected] #BeCounted #CareAboutRare
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https://lnkd.in/gxCSXA9e CHF Friends and Family Webinar: Phenotype Study Updates Date: May 30, 2024 Time: 9:00 AM CDT (US and Canada) / 4:00 PM CEST (Spain) Description: Drs. Paloma Parra and Antonio Gil-Nagel Rein will present updates to families on their NALCN/UNC80 phenotype study.
You're invited: Phenotype Study Webinar
channelinghope.org
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Our work on NALCN pharmacology that was started 3 years ago during my Master's thesis is now finally published! Huge thanks to Han Chow Chua, Stephan Alexander Pless and the team for having made this possible!! ??
Our paper on NALCN pharmacology (including the first molecularly defined drug binding site!) is finally published in PNAS - https://lnkd.in/g5_AxcdM! It took over a year, but we are incredibly proud of the progress we've made in understanding NALCN pharmacology. Congrats to?Katharina Schott, Samuel Usher, Stephan Alexander Pless, Oscar Serra and Vincenzo Carnevale!
Unplugging lateral fenestrations of NALCN reveals a hidden drug binding site within the pore region | Proceedings of the National Academy of Sciences
pnas.org
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Congrats to the whole team involved in uncovering a hidden NALCN drug binding site in and uncovering some novel pharmacology for this leak channel - special shout out to Han Chow Chua for leading the effort! Full story out in PNAS now: https://lnkd.in/dxtC5PEq Katharina Schott Samuel Usher Oscar Serra Vincenzo Carnevale
Our paper on NALCN pharmacology (including the first molecularly defined drug binding site!) is finally published in PNAS - https://lnkd.in/g5_AxcdM! It took over a year, but we are incredibly proud of the progress we've made in understanding NALCN pharmacology. Congrats to?Katharina Schott, Samuel Usher, Stephan Alexander Pless, Oscar Serra and Vincenzo Carnevale!
Unplugging lateral fenestrations of NALCN reveals a hidden drug binding site within the pore region | Proceedings of the National Academy of Sciences
pnas.org
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We are excited to announce our participation in a clinical trial focused on improving caregiver well-being. This study is conducted by Dr. Bridgette Kelleher through Kelleher Lab at Purdue University. Caregivers of individuals with NALCN/UNC80 genetic mutations living in the United States* are eligible.?
Project Wellcast: Clinical Trial
channelinghope.org