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==Research==
==Research==
Since its inception, CRF has funded approximately $4.5 million in research <ref name="ref2" /> including projects in neuroprotection <ref name="ref3" />, pathophysiology <ref name="ref4" /><ref name="ref8" /><ref name="ref10" />, gene therapy <ref name="ref5" /><ref name="ref16" /><ref name="ref18" />, imaging <ref name="ref6" /><ref name="ref7" /><ref name="ref11" />, stem cell therapy (9), phenotyping (12), and more. CRF has also collaborated to accelerate CHM clinical trials with several industry companies including Nightstar Therapeutics <ref name="ref17" />, Biogen <ref name="ref19" />, 4D Molecular Therapeutics <ref name="ref20" />, and Spark Therapeutics (21,33).
Since its inception, CRF has funded approximately $4.5 million in research <ref name="ref2" /> including projects in neuroprotection <ref name="ref3" />, pathophysiology <ref name="ref4" /><ref name="ref8" /><ref name="ref10" />, gene therapy <ref name="ref5" /><ref name="ref16" /><ref name="ref18" />, imaging <ref name="ref6" /><ref name="ref7" /><ref name="ref11" />, stem cell therapy (9), phenotyping (12), and more. CRF has also collaborated to accelerate CHM clinical trials with several industry companies including Nightstar Therapeutics <ref name="ref17" />, Biogen <ref name="ref19" />, 4D Molecular Therapeutics <ref name="ref20" />, and Spark Therapeutics <ref name="ref21" /><ref name="ref23" />.
Many research projects have included joint funding collaborations between CRF and the Penn Orphan Disease Center (13), and the Choroideremia Research Foundation Canada (14). In 2021, an endowment fund was created to fund future research projects (15).
Many research projects have included joint funding collaborations between CRF and the Penn Orphan Disease Center <ref name="ref13" />, and the Choroideremia Research Foundation Canada <ref name="ref14" />. In 2021, an endowment fund was created to fund future research projects <ref name="ref15" />.
CRF has established a CHM Eye Donation Program (46), a patient registry (47), and a CHM Biobank (48). CHM is often initially diagnosed as a similar condition called Retinitis Pigmentosa (41). To educate medical professionals, a Differential Diagnosis Power Point was created (40).
CRF has established a CHM Eye Donation Program <ref name="ref46" />, a patient registry <ref name="ref47" />, and a CHM Biobank <ref name="ref48" />. CHM is often initially diagnosed as a similar condition called Retinitis Pigmentosa <ref name="ref41" />. To educate medical professionals, a Differential Diagnosis Power Point was created <ref name="ref40" />.


==Patient Advocacy==
==Patient Advocacy==
As choroideremia is considered a rare inherited retinal disease (30), CRF is active in advocating on behalf of CHM patients within both the rare disease community and the inherited retinal disease community. Within the rare disease space, CRF is recognized by of the National Organization for Rare Disorders (22), Global Genes (23) and the National Center for Advancing Translational Sciences (28). In the inherited retinal disease space, CRF is actively involved with Retina International (24), the National Society of Genetic Counselors (25), the National Eye Institute (26), the Association for Research in Vision and Ophthalmology (27,29), and the American Society for Gene and Cell Therapy (31).
As choroideremia is considered a rare inherited retinal disease <ref name="ref30" />, CRF is active in advocating on behalf of CHM patients within both the rare disease community and the inherited retinal disease community. Within the rare disease space, CRF is recognized by of the National Organization for Rare Disorders <ref name="ref22" />, Global Genes <ref name="ref23" /> and the National Center for Advancing Translational Sciences <ref name="ref28" />. In the inherited retinal disease space, CRF is actively involved with Retina International <ref name="ref24" />, the National Society of Genetic Counselors <ref name="ref25" />, the National Eye Institute <ref name="ref26" />, the Association for Research in Vision and Ophthalmology <ref name="ref27" /><ref name="ref29" />, and the American Society for Gene and Cell Therapy <ref name="ref31" />.


==Patient Education Services==
==Patient Education Services==
In addition to funding research and advocating for patients internationally, CRF also provides educational programs and supportive services for all those affected by CHM around the world. CRF offers patient navigators (44), webinars (45), virtual social and support groups (42,43), international conferences, regional town hall meetings (35), and offers a speaker’s bureau (38,39). Many of CRF’s speakers feature inspirational presentations by both patients (32,35,37,49,50) and medical professionals (36,51).
In addition to funding research and advocating for patients internationally, CRF also provides educational programs and supportive services for all those affected by CHM around the world. CRF offers patient navigators <ref name="ref44" />, webinars <ref name="ref45" />, virtual social and support groups <ref name="ref42" /><ref name="ref43" />, international conferences, regional town hall meetings <ref name="ref35" />, and offers a speaker’s bureau <ref name="ref38" /><ref name="ref39" />. Many of CRF’s speakers feature inspirational presentations by both patients <ref name="ref32" /><ref name="ref35" /><ref name="ref37" /><ref name="ref49" /><ref name="ref50" /> and medical professionals <ref name="ref36" /><ref name="ref51" />.


==Volunteers and Fundraising==
==Volunteers and Fundraising==
CRF is a grassroots organization largely run by volunteers (58). Numerous individuals participate in fitness and other community events each year to fundraise for the organization (59,60,61,62,63,64,65).
CRF is a grassroots organization largely run by volunteers <ref name="ref58" />. Numerous individuals participate in fitness and other community events each year to fundraise for the organization <ref name="ref59" /><ref name="ref60" /><ref name="ref61" /><ref name="ref62" /><ref name="ref63" /><ref name="ref64" /><ref name="ref65" />.
One notable choroideremia patient is actor EJ Scott (66), husband of actress Deborah Ann Woll (67). Scott and Woll have both actively created awareness about choroideremia and fundraised for CRF since 2007 (68,69,70,71,72,73,74,75,76,77,78).
One notable choroideremia patient is actor EJ Scott <ref name="ref66" />, husband of actress Deborah Ann Woll <ref name="ref67" />. Scott and Woll have both actively created awareness about choroideremia and fundraised for CRF since 2007 <ref name="ref68" /><ref name="ref69" /><ref name="ref70" /><ref name="ref71" /><ref name="ref72" /><ref name="ref73" /><ref name="ref74" /><ref name="ref75" /><ref name="ref76" /><ref name="ref77" /><ref name="ref78" />.




Revision as of 05:25, 4 December 2021

Welcome to Todd's Sandbox.

Work In Progress: https://en.wikipedia.org/wiki/Choroideremia_Research_Foundation

Choroideremia Research Foundation
Formation2000
TypeNon-Profit
Purposezzz - insert mission
HeadquartersSpringfield, MA
Websitecurechm.org

History

The Choroideremia Research Foundation (CRF) is a 501(c)(3) public charity [1] that was founded in 2000 by choroideremia patients and their family members. CRF’s mission is to fund research towards finding treatment options and a cure for choroideremia (CHM) [2], a degenerative, x-linked [3], inherited retinal disease that causes progressive vision loss [4] which may ultimately lead to blindness. CRF has received the highest rating of Platinum on Candid/Guidestar [5], a 100/100 “Give With Confidence” score on Charity Navigator [6], and is a “Top Rated Nonprofit” on Great Nonprofits [7].

Research

Since its inception, CRF has funded approximately $4.5 million in research [8] including projects in neuroprotection [9], pathophysiology [10][11][12], gene therapy [13][14][15], imaging [16][17][18], stem cell therapy (9), phenotyping (12), and more. CRF has also collaborated to accelerate CHM clinical trials with several industry companies including Nightstar Therapeutics [19], Biogen [20], 4D Molecular Therapeutics [21], and Spark Therapeutics [22][23]. Many research projects have included joint funding collaborations between CRF and the Penn Orphan Disease Center [24], and the Choroideremia Research Foundation Canada [25]. In 2021, an endowment fund was created to fund future research projects [26]. CRF has established a CHM Eye Donation Program [27], a patient registry [28], and a CHM Biobank [29]. CHM is often initially diagnosed as a similar condition called Retinitis Pigmentosa [30]. To educate medical professionals, a Differential Diagnosis Power Point was created [31].

Patient Advocacy

As choroideremia is considered a rare inherited retinal disease [32], CRF is active in advocating on behalf of CHM patients within both the rare disease community and the inherited retinal disease community. Within the rare disease space, CRF is recognized by of the National Organization for Rare Disorders [33], Global Genes [23] and the National Center for Advancing Translational Sciences [34]. In the inherited retinal disease space, CRF is actively involved with Retina International [35], the National Society of Genetic Counselors [36], the National Eye Institute [37], the Association for Research in Vision and Ophthalmology [38][39], and the American Society for Gene and Cell Therapy [40].

Patient Education Services

In addition to funding research and advocating for patients internationally, CRF also provides educational programs and supportive services for all those affected by CHM around the world. CRF offers patient navigators [41], webinars [42], virtual social and support groups [43][44], international conferences, regional town hall meetings [45], and offers a speaker’s bureau [46][47]. Many of CRF’s speakers feature inspirational presentations by both patients [48][45][49][50][51] and medical professionals [52][53].

Volunteers and Fundraising

CRF is a grassroots organization largely run by volunteers [54]. Numerous individuals participate in fitness and other community events each year to fundraise for the organization [55][56][57][58][59][60][61]. One notable choroideremia patient is actor EJ Scott [62], husband of actress Deborah Ann Woll [63]. Scott and Woll have both actively created awareness about choroideremia and fundraised for CRF since 2007 [64][65][66][67][68][69][70][71][72][73][74].


References

  1. ^ Nonprofit status https://projects.propublica.org/nonprofits/organizations/43511754
  2. ^ Listed under Wikipedia page for definition of Choroideremia https://en.wikipedia.org/wiki/Choroideremia
  3. ^ X-linked information https://gene.vision/knowledge-base/choroideremia-for-patients/
  4. ^ Listed as resource on Kaiser Permanente website https://wa.kaiserpermanente.org/kbase/topic.jhtml?docId=nord244
  5. ^ Guidestar https://www.guidestar.org/profile/04-3511754
  6. ^ Charity Navigator: https://www.charitynavigator.org/ein/043511754
  7. ^ Great NonProfits https://greatnonprofits.org/org/choroideremia-research-foundation-inc
  8. ^ CRF Research Funding Page https://www.curechm.org/research/#_funded
  9. ^ Moosajee grant awarded 2021 https://www.biospace.com/article/releases/choroideremia-research-foundation-supports-new-research-to-expand-knowledge-of-this-rare-inherited-retinal-disease/
  10. ^ Edwards receives Wheelock Award https://www.waisman.wisc.edu/2020/05/06/grant-awarded-for-eye-disease-research/
  11. ^ Fahim Grant https://www.massachusettshealthcarejournal.com/article/556554343
  12. ^ Kalatzis grant on France Choroideremie website https://france-choroideremie.org/choroideremia-research-foundation-seeks-to-understand-a-disease-similar-to-retinitis-pigmentosa-causing-vision-loss/
  13. ^ Moosajee Grant awarded 2020; published 2021 https://www.mdpi.com/1648-9144/57/1/64/htm
  14. ^ Gene Therapy Paper https://tvst.arvojournals.org/article.aspx?articleid=2761571
  15. ^ Visual Acuity after Retinal Gene Therapy for Choroideremia https://www.nejm.org/doi/full/10.1056/nejmc1509501
  16. ^ 2018 Pennesi grant awarded https://onlinelibrary.wiley.com/doi/abs/10.1002/jbio.201700313
  17. ^ 2016 Pennesi grant awarded file:///C:/Users/Owner/Downloads/ebr160003.pdf
  18. ^ Zhai press release https://www.einnews.com/pr_news/522721646/choroideremia-research-foundation-announces-new-research-award-to-study-the-efficacy-of-novel-therapeutics
  19. ^ Nightstar Clinical Trial https://www.globenewswire.com/news-release/2018/03/05/1414686/0/en/Nightstar-Therapeutics-Announces-Initiation-of-STAR-Phase-3-Registrational-Trial-for-NSR-REP1-in-Choroideremia.html
  20. ^ Cite error: The named reference ref19 was invoked but never defined (see the help page).
  21. ^ Cite error: The named reference ref20 was invoked but never defined (see the help page).
  22. ^ Spark website listed as advocacy partner: https://sparktx.com/patients-families/inherited-retinal-diseases/
  23. ^ a b https://globalgenes.org/disease/choroideremia/groups/
  24. ^ MDBR collaboration https://www.einnews.com/pr_news/551381892/choroideremia-research-foundation-raises-218-000-to-benefit-penn-medicine-orphan-disease-center
  25. ^ CRF Canada https://curechm.ca/
  26. ^ Boone Endowment Fund – https://techtodaynewspaper.com/choroideremia-research-foundation-receives-first-ever-endowment-to-support-retinal-disease-research-for-choroideremia/
  27. ^ CRF Eye Donation Program https://www.youtube.com/watch?v=wRs5K6XMLfI
  28. ^ CRF Patient Registry https://www.curechm.org/chm-patient-registry/
  29. ^ WiCell BioBank https://hpscreg.eu/browse/provider/1075
  30. ^ RP or CHM https://visionaware.org/blog/visionaware-blog/retinitis-pigmentosa-or-choroideremia-genetic-testing-may-be-the-only-way-to-know/
  31. ^ RP vs. CHM Differential Diagnosis https://www.curechm.org/wp-content/uploads/2019/09/CHMvsRP-revised-06-2019.pdf
  32. ^ Orphanet https://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=180
  33. ^ NORD website https://rarediseases.org/organizations/choroideremia-research-foundation-inc/
  34. ^ Listed on NCATS website as an advocacy organization https://rarediseases.info.nih.gov/diseases/6061/choroideremia
  35. ^ Retina International
  36. ^ Listed on National Society of Genetic Counselors website as a signor of genetic testing advocacy bill: https://www.nsgc.org/Policy-Research-and-Publications/Federal-Advocacy/Bill-Letter-Signature
  37. ^ NEI website https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/eye-health-organizations-database/choroideremia-research-foundation-crf
  38. ^ Patient Engagement Article 2017 https://www.arvo.org/journals-and-publications/arvonews-issues/Fall-2017/patient-engagement/
  39. ^ Randy profile on ARVO website: https://arvoconnect.arvo.org/people/randy-wheelock
  40. ^ American society of gene and cell therapy - listed as patient resource https://patienteducation.asgct.org/disease-treatments/inherited-retinal-diseases
  41. ^ Listed as support org https://www.diseaseinfosearch.org/organization/Choroideremia+Research+Foundation%2C+Inc./1140
  42. ^ Intro to Mobile Apps webinar https://www.youtube.com/watch?v=tS9Vqp2S1uk&t=13s
  43. ^ Listed as support group https://rarediseases.oscar.ncsu.edu/disease/choroideremia/communities/
  44. ^ UV Patient Support Group https://med.virginia.edu/ophthalmology/research/graingers-lab/patient-support-groups/
  45. ^ a b 2019 UK Regional Meeting https://www.moorfieldsbrc.nihr.ac.uk/news-and-events/choroideremia-research-foundation-first-patient-day
  46. ^ Reach Out Radio interview https://www.reachoutradio.org/post/when-it-time-use-cane-choroideremia-foundation-will-chat-about-august-6th
  47. ^ USA Today Chris Moen article: https://www.usatoday.com/story/sponsor-story/spark-therapeutics/2019/12/17/4-deeply-personal-stories-impact-genetic-testing/2640169001/
  48. ^ 2012 Conference Keynote https://speakola.com/motivate/jeff-benelli-choroideremia-crf-2012
  49. ^ CheckRare Cory interview: https://checkrare.com/choroideremia-overview/
  50. ^ Saving Sight is our Vision video https://www.youtube.com/watch?v=8T9qHCqWBpc&t=5s
  51. ^ CRF Video https://www.youtube.com/watch?v=su5GPLl3S_k&t=2s
  52. ^ University of Alberta Blog videos https://chmgenetherapy.wordpress.com/posts-2/
  53. ^ News Medical Net website: https://www.news-medical.net/health/What-is-Choroideremia.aspx
  54. ^ Polkowski volunteers https://www.newstimes.com/news/article/Fighting-tunnel-vision-254317.php
  55. ^ Hawaii Public Radio interview with Danny Boren re fundraising https://www.hawaiipublicradio.org/show/the-conversation/2014-01-30/mediation-vs-lawsuits-choral-society-hb948-choroideremia-research-foundation
  56. ^ 2015 Ostoberfest fundraiser http://www.ostoberfest.com/who-is-crf-.html
  57. ^ 2021 NYC Marathon: https://curechm.salsalabs.org/2021tcsnewyorkcitymarathonteamchm/index.html
  58. ^ MDBR 2021 https://techtodaynewspaper.com/choroideremia-research-foundation-raises-218000-to-benefit-penn-medicine-orphan-disease-center/
  59. ^ 2020 Theta Chi fundraiser https://myfraternitylife.org/2020/02/01/cookout-raises-14000-for-research-foundation/
  60. ^ Eye Want to Know Website – Stephanie Sims interview https://www.eyewant2know.com/community-stories/an-ironwoman-takes-on-choroideremia/
  61. ^ Fundraisers See by the See https://patch.com/massachusetts/swampscott/see-by-the-sea-lacrosse-benefits-choroideremia-research
  62. ^ EJ Scott https://www.imdb.com/name/nm2907034/
  63. ^ Deborah Ann Woll https://en.wikipedia.org/wiki/Deborah_Ann_Woll
  64. ^ EJ Scott fundraising https://www.ejscott.com/stephen-perlstein-run-half-marathon-choroideremia-research-foundation/
  65. ^ EJ Scott, Running Blind documentary https://www.mountainfilm.org/festival/personalities/ej-scott
  66. ^ EJ Scott wedding donations https://www.upi.com/Entertainment_News/2019/02/11/Daredevil-star-Deborah-Ann-Woll-EJ-Scott-announce-marriage/3751549896224/
  67. ^ People Magazine EJ Scott fundraising https://people.com/celebrity/true-blood-stars-boyfriend-e-j-scott-running-to-fight-choroideremia/
  68. ^ US magazine Scott/Woll wedding https://www.usmagazine.com/celebrity-news/pictures/celebrity-weddings-of-2019/allen-leech-and-jessica-blair-herman/
  69. ^ E! Online Scott/Woll wedding https://www.eonline.com/news/1013345/surprise-daredevil-s-deborah-ann-woll-is-married
  70. ^ Chicago Magazine EJ Scott fundraising https://www.chicagomag.com/city-life/october-2010/ej-scott-to-run-marathon-blindfolded-comedy-for-a-cure-benefit-for-choroideremia/
  71. ^ UK Daily Mail Woll Interview https://www.dailymail.co.uk/tvshowbiz/article-2217796/Deborah-Ann-Wolls-boyfriend-E-J-runs-marathons-raise-funds-eye-disease-make-blind-40.html
  72. ^ National Enquirer Woll interview https://www.nationalenquirer.com/celebrity/tears-vampire-hottie/
  73. ^ Glamour Woll interview https://www.glamour.com/story/true-blood-s-deborah-ann-woll-s-boyfriend-s-fight-against-blindness
  74. ^ Hollywood Reporter Woll/Scott https://www.hollywoodreporter.com/lifestyle/style/ej-scott-run-marathon-blindfolded-raise-money-disease-376229/

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Websitewww.curechm.org

Twitter https://twitter.com/curechm

Linkedin https://www.linkedin.com/company/3863722

Instagram https://www.instagram.com/curechm

WhatsApp https://chat.whatsapp.com/CqfMQ96KjgD8SEvcMGeJC1

YouTube https://www.youtube.com/curechm

Facebook https://www.facebook.com/CureCHM



Category:Blindness organizations in the United States Category:Non-profit organizations based in Massachusetts

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