CureSHANK

From Wikitia
Jump to navigation Jump to search
CureSHANK
IndustryNon Profit & Research
Founded2019; 5 years ago (2019)
Founder
  • Geraldine Bliss
  • Paulina Rychenkova
  • Abby Lievense
HeadquartersBeverly Hills, CA
Key people
  • Talya Emery Silva
  • Morgan Sheng
  • Shafali Jeste
  • Jamil Beg
  • Federico Bolognani
  • Brett Abrahams
  • Walter Kowtoniuk
Websitecureshank.org

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.[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

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.

Operations

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.[8] 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.

In the media

  

References

  1. "New nonprofit organization formed to accelerate drug development in autism-associated genetic conditions". EurekAlert!. Retrieved 15 December 2021.
  2. "CureSHANK - Overview, News & Competitors | ZoomInfo.com". ZoomInfo. Retrieved 15 December 2021.
  3. "Epilepsy Community Calls for Rescission of Six Protected Classes Demonstration and Protection of Access to Anticonvulsants". Epilepsy Foundation. Retrieved 15 December 2021.
  4. "about-us". alliancegenda.org. Retrieved 15 December 2021.
  5. "Healx and Bit Bio engage patients with rare diseases for public webinar". Cambridge Independent. 8 August 2020. Retrieved 15 December 2021.
  6. "CureSHANK - Overview, Competitors, and Employees". Apollo.io. Retrieved 15 December 2021.
  7. "New family group pursues treatments for autism-linked syndrome". Spectrum | Autism Research News. 19 November 2019. Retrieved 15 December 2021.
  8. "New NPO formed to accelerate development of therapies for Shankopathies". News-Medical.net. 23 October 2019. Retrieved 15 December 2021.

External links