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<ref name="ref2">CRF Research Funding Page https://www.curechm.org/research/#_funded</ref>
<ref name="ref2">CRF Research Funding Page https://www.curechm.org/research/#_funded</ref>
<ref name="ref3">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/</ref>
<ref name="ref3">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/</ref>
<ref name="ref4">Edwards receives Wheelock Award https://www.waisman.wisc.edu/2020/05/06/grant-awarded-for-eye-disease-research/ </ref>
<ref name="ref5">Moosajee Grant awarded 2020; published 2021 https://www.mdpi.com/1648-9144/57/1/64/htm</ref>
<ref name="ref6">2018 Pennesi grant awarded https://onlinelibrary.wiley.com/doi/abs/10.1002/jbio.201700313 </ref>
<ref name="ref7">2016 Pennesi grant awarded file:///C:/Users/Owner/Downloads/ebr160003.pdf</ref>
<ref name="ref8">Fahim Grant https://www.massachusettshealthcarejournal.com/article/556554343</ref>
<ref name="ref9">Gamm research grant 2021 https://techtodaynewspaper.com/choroideremia-research-foundation-seeks-to-understand-retinal-protein-that-causes-vision-loss-and-blindness-when-mutated/</ref>
<ref name="ref10">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/</ref>
<ref name="ref11">Zhai press release https://www.einnews.com/pr_news/522721646/choroideremia-research-foundation-announces-new-research-award-to-study-the-efficacy-of-novel-therapeutics</ref>
<ref name="ref12">Hume research award https://www.tampafp.com/choroideremia-research-foundation-funds-ground-breaking-research-on-two-brothers-with-chm/</ref>
<ref name="ref13">MDBR collaboration https://www.einnews.com/pr_news/551381892/choroideremia-research-foundation-raises-218-000-to-benefit-penn-medicine-orphan-disease-center</ref>
<ref name="ref14">CRF Canada https://curechm.ca/</ref>
<ref name="ref15">Boone Endowment Fund – https://techtodaynewspaper.com/choroideremia-research-foundation-receives-first-ever-endowment-to-support-retinal-disease-research-for-choroideremia/</ref>
<ref name="ref16">Gene Therapy Paper https://tvst.arvojournals.org/article.aspx?articleid=2761571</ref>
<ref name="ref17">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</ref>
<ref name="ref18">Visual Acuity after Retinal Gene Therapy for Choroideremia https://www.nejm.org/doi/full/10.1056/nejmc1509501</ref>
<ref name="ref19">Cory’s story https://www.biogen.com/en_us/stories/cory-story.html</ref>
<ref name="ref20">Listed as 4D patient advocacy partner https://www.4dmoleculartherapeutics.com/patients-advocacy/</ref>
<ref name="ref21">Spark website listed as advocacy partner: https://sparktx.com/patients-families/inherited-retinal-diseases/</ref>
<ref name="ref22">NORD website https://rarediseases.org/organizations/choroideremia-research-foundation-inc/</ref>
<ref name="ref23">https://globalgenes.org/disease/choroideremia/groups/</ref>
<ref name="ref24">Retina International</ref>
<ref name="ref25">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</ref>
<ref name="ref26">NEI website https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/eye-health-organizations-database/choroideremia-research-foundation-crf</ref>
<ref name="ref27">Patient Engagement Article 2017 https://www.arvo.org/journals-and-publications/arvonews-issues/Fall-2017/patient-engagement/</ref>
<ref name="ref28">Listed on NCATS website as an advocacy organization https://rarediseases.info.nih.gov/diseases/6061/choroideremia</ref>
<ref name="ref29">Randy profile on ARVO website: https://arvoconnect.arvo.org/people/randy-wheelock</ref>
<ref name="ref30">Orphanet https://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=180</ref>
<ref name="ref31">American society of gene and cell therapy - listed as patient resource https://patienteducation.asgct.org/disease-treatments/inherited-retinal-diseases</ref>
<ref name="ref32">2012 Conference Keynote https://speakola.com/motivate/jeff-benelli-choroideremia-crf-2012</ref>
<ref name="ref33">Spark Trial https://www.biospace.com/article/releases/-b-choroideremia-research-foundation-b-release-groundbreaking-gene-therapy-trial-begins-in-philadelphia-/</ref>
<ref name="ref34">CNN Driving Blind https://www.cnn.com/2014/09/29/health/brothers-choroideremia-trip/index.html</ref>
<ref name="ref35">2019 UK Regional Meeting https://www.moorfieldsbrc.nihr.ac.uk/news-and-events/choroideremia-research-foundation-first-patient-day</ref>
<ref name="ref36">University of Alberta Blog videos https://chmgenetherapy.wordpress.com/posts-2/</ref>
<ref name="ref37">CheckRare Cory interview: https://checkrare.com/choroideremia-overview/</ref>
<ref name="ref38">Reach Out Radio interview https://www.reachoutradio.org/post/when-it-time-use-cane-choroideremia-foundation-will-chat-about-august-6th</ref>


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Revision as of 05:51, 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. ^ Cite error: The named reference ref56 was invoked but never defined (see the help page).
  2. ^ Listed under Wikipedia page for definition of Choroideremia https://en.wikipedia.org/wiki/Choroideremia
  3. ^ Cite error: The named reference ref52 was invoked but never defined (see the help page).
  4. ^ Cite error: The named reference ref53 was invoked but never defined (see the help page).
  5. ^ Cite error: The named reference ref54 was invoked but never defined (see the help page).
  6. ^ Cite error: The named reference ref55 was invoked but never defined (see the help page).
  7. ^ Cite error: The named reference ref57 was invoked but never defined (see the help page).
  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. ^ Cory’s story https://www.biogen.com/en_us/stories/cory-story.html
  21. ^ Listed as 4D patient advocacy partner https://www.4dmoleculartherapeutics.com/patients-advocacy/
  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. ^ Cite error: The named reference ref46 was invoked but never defined (see the help page).
  28. ^ Cite error: The named reference ref47 was invoked but never defined (see the help page).
  29. ^ Cite error: The named reference ref48 was invoked but never defined (see the help page).
  30. ^ Cite error: The named reference ref41 was invoked but never defined (see the help page).
  31. ^ Cite error: The named reference ref40 was invoked but never defined (see the help page).
  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. ^ Cite error: The named reference ref44 was invoked but never defined (see the help page).
  42. ^ Cite error: The named reference ref45 was invoked but never defined (see the help page).
  43. ^ Cite error: The named reference ref42 was invoked but never defined (see the help page).
  44. ^ Cite error: The named reference ref43 was invoked but never defined (see the help page).
  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. ^ Cite error: The named reference ref39 was invoked but never defined (see the help page).
  48. ^ 2012 Conference Keynote https://speakola.com/motivate/jeff-benelli-choroideremia-crf-2012
  49. ^ CheckRare Cory interview: https://checkrare.com/choroideremia-overview/
  50. ^ Cite error: The named reference ref49 was invoked but never defined (see the help page).
  51. ^ Cite error: The named reference ref50 was invoked but never defined (see the help page).
  52. ^ University of Alberta Blog videos https://chmgenetherapy.wordpress.com/posts-2/
  53. ^ Cite error: The named reference ref51 was invoked but never defined (see the help page).
  54. ^ Cite error: The named reference ref58 was invoked but never defined (see the help page).
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External Links

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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