CureSHANK
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| ISIN | 🆔 |
|---|---|
| Industry | Non Profit & Research |
| Founded 📆 | 2019 |
| Founder 👔 |
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| Headquarters 🏙️ | Beverly Hills, California |
Area served 🗺️ | |
Key people |
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| Members | |
Number of employees | |
| 🌐 Website | cureshank |
| 📇 Address | |
| 📞 telephone | |
CureSHANK is a US-based non-governmental research organization based in Beverly Hills, CA, that focuses on the drug development[1] of treatments for Phelan-McDermid Syndrome (PMS) and other diseases related to the SHANK genes.[2] It was established in 2019 by Geraldine Bliss, Paulina Rychenkova, and Abby Lievense, parents of children affected by PMS.
The organization raises and allocates funds to further targeted research in PMS and SHANK-related diseases to help bridge the translational research gap between basic science and successful clinical trials.[3] CureSHANK serves as a convener of various stakeholders who are instrumental to the development of treatments and therapies. Since its inception, CureSHANK has worked with many pharma and biotechnology companies, academic institutions, and entered into partnership with Global Genes, American Brain Coalition, REN, Agenda,[4] Combined, and other research organizations.[5]
History[edit]
CureSHANK was incorporated in California on July 3, 2019, with the mission to find treatments for PMS and other diseases related to the SHANK genes for which there are currently no FDA-approved treatments.[6] In February 2020, the organization acquired the 501(c)3 status. Phelan-McDermid Syndrome is a rare genetic disorder caused by a deletion or a mutation in the SHANK3 gene that affects one out of every 15,000 children. There is a high correlation between PMS and diagnoses of autism, autism spectrum disorder,[7] and/or intellectual disability.
On November 8, 2022, CureSHANK sponsored a "Phelan-McDermid Syndrome Externally-Led Patient-Focused Drug Development meeting" with the US Food and Drug Administration. Patients and their families, care providers, and advocates were able to meet with lawmakers, healthcare workers, and medical product developers and share how the disease has impacted them, and their experience with treatments available at the time.[8]
CureSHANK announced on February 11, 2023, that it had committed US$450,000 to research projects for the year.[9]
Operations[edit]
CureSHANK’s model is to expand the traditional philanthropy approach of directly funding research through donations by building new collaborations with a diverse range of stakeholders, including emerging and existing life sciences companies, that are critical to producing breakthrough therapies.[10] CureSHANK with guidance from its Strategic Board of Advisors, identifies and addresses key bottlenecks in the development of treatments for PMS and SHANK-related disorders. CureSHANK is led by its board of directors, which includes its three founders and vice president Talya Emery Silva.[11]
References[edit]
- ↑ "New nonprofit organization formed to accelerate drug development in autism-associated genetic conditions". EurekAlert!. Retrieved 15 December 2021.
- ↑ "CureSHANK - Overview, News & Competitors | ZoomInfo.com". ZoomInfo. Retrieved 15 December 2021.
- ↑ "Epilepsy Community Calls for Rescission of Six Protected Classes Demonstration and Protection of Access to Anticonvulsants". Epilepsy Foundation. Retrieved 15 December 2021.
- ↑ "about-us". alliancegenda.org. Retrieved 15 December 2021.
- ↑ "Healx and Bit Bio engage patients with rare diseases for public webinar". Cambridge Independent. 8 August 2020. Retrieved 15 December 2021.
- ↑ "CureSHANK - Overview, Competitors, and Employees". Apollo.io. Retrieved 15 December 2021.
- ↑ "New family group pursues treatments for autism-linked syndrome". Spectrum | Autism Research News. 19 November 2019. Retrieved 15 December 2021.
- ↑ Grossi, Giuliana (November 8, 2022). "Caregivers of Individuals With Phelan-McDermid Syndrome and FDA Discuss Treatment Potential". HCP Live. Retrieved April 19, 2023.
- ↑ Emery Silva, Talya (February 11, 2023). "CureSHANK Commits $450,000 for Research Projects in 2023". CureSHANK. Retrieved April 19, 2023.
- ↑ "New NPO formed to accelerate development of therapies for Shankopathies". News-Medical.net. 23 October 2019. Retrieved 15 December 2021.
- ↑ "Leadership". CureSHANK. Retrieved April 20, 2023.
