Sattler, Rita http://orcid.org/0000-0002-7593-2908
Traynor, Bryan J. http://orcid.org/0000-0003-0527-2446
Robertson, Janice http://orcid.org/0009-0003-6467-4223
Van Den Bosch, Ludo http://orcid.org/0000-0003-0104-4067
Barmada, Sami J. http://orcid.org/0000-0002-9604-968X
Svendsen, Clive N. http://orcid.org/0000-0001-8696-3446
Disney, Matthew D. http://orcid.org/0000-0001-8486-1796
Gendron, Tania F. http://orcid.org/0000-0002-7335-2627
Wong, Philip C. http://orcid.org/0000-0001-8162-3274
Turner, Martin R. http://orcid.org/0000-0003-0267-3180
Boxer, Adam http://orcid.org/0000-0002-1215-5064
Babu, Suma http://orcid.org/0000-0002-2648-7625
Benatar, Michael http://orcid.org/0000-0003-4241-5135
Kurnellas, Michael http://orcid.org/0000-0002-1264-6672
Rohrer, Jonathan D. http://orcid.org/0000-0002-6155-8417
Donnelly, Christopher J. http://orcid.org/0000-0002-2383-9015
Bustos, Lynette M.
Van Keuren-Jensen, Kendall
Dacks, Penny A.
Sabbagh, Marwan N. http://orcid.org/0000-0003-1149-4192
Alessandrini, Francesco
Andrews, Jinsy A.
Bakkar, Nadine
Berry, James D.
Boeve, Brad F.
Bowser, Robert
Burke, Anna D.
Cridebring, Derek
Cummings, Jeffrey L.
Ejebe, Kenechi G.
Gittings, Lauren M.
Gao, Fen-Biao
Haeusler, Aaron R.
Ichida, Justin K.
Jafar-Nejad, Paymaan
Kinney, Jefferson W.
Ladha, Shafeeq S.
Lewcock, Joseph W.
Linerud, Joanne L.
Medina, David X.
Niehoff, Debra L.
Nilsson, Mark
Nilsson, Paula
Penner, Cooper
Rothstein, Jeffrey D.
Satlin, Andrew
Scannevin, Robert H.
Shefner, Jeremy M.
Shin, Hijai Regina
Staffaroni, Adam M.
Sun, Shuying
Thakur, Neil M.
Vieira, Fernando G.
,
Funding for this research was provided by:
Barrow Neurological Foundation
National Institute on Aging (ZIAAG000933-15)
Arizona Community Foundation
Article History
Received: 6 August 2023
Accepted: 14 September 2023
First Online: 17 October 2023
Declarations
:
: Janice Robertson, Sami J. Barmada, Clive Svendsen, Tania F. Gendron, Philip C. Wong, Martin R. Turner, Adam Boxer, Michael Kurnellas, Lynette M Bustos, Kendall Van Keuren-Jensen have nothing to disclose. Rita Sattler is a member of the Scientific Advisory Board of Spinogenix Inc, the LiveLikeLou Foundation, the Robert Packard Center and Northeast ALS consortium. Bryan J. Traynor holds patents on the diagnostic and therapeutic implications of the C9orf72 repeat expansion. Ludo Van Den Bosch is head of the Scientific Advisory Board of Augustine Therapeutics (Leuven, Belgium) and is part of the Investment Advisory Board of Droia Ventures (Meise, Belgium). Jonathan D Rohrer has provided consultancy or been on an advisory board for Novartis, Wave Life Sciences, Prevail, Alector, Aviado Bio, Arkuda Therapeutics, and Denali Therapeutics. Matthew D. Disney is a founder of Expansion Therapeutics. Christopher J Donnelly is cofounder and advisor for Confluence Therapeutics. Michael Benatar reports grants from the National Institutes of Health, the Muscular Dystrophy Association, and the ALS Association; and receives consulting fees for Alector, Alexion, Annexon, Arrowhead, Biogen, Cartesian, Denali, Eli Lilly, Horizon, Immunovant, Novartis, Roche, Sanofi, Takeda, UCB, and UniQure. The University of Miami has licensed intellectual property to Biogen Inc. to support the design of the ATLAS study. He has a provisional patent ‘Determining Onset of ALS’ (US Patent No. 17/941,117). He serves as a member of the Board of Trustees for the ALS Association. Suma Babu has received research funding from Biogen Inc. (including the BIIB078 ASO trial for C9ORF72 ALS), AI therapeutics, Novartis, Orion, Voyager Therapeutics, Medicinova, Ionis, American Academy of Neurology, AANEM Foundation, and Muscular Dystrophy Association. Penny A. Dacks is an employee of the Association for Frontotemporal Degeneration (AFTD), King of Prussia, PA, USA. Marwan N. Sabbagh is a consultant for Roche-Genentech, Eisai, Lilly, Synaptogenix, NeuroTherapia, T3D, Signant Health, Novo Nordisk, Corium, Prothena, KeiferRx; is on the board of directors at CervoMed; and receives stock options/owns stocks from Athira, Lighthouse Pharmaceuticals, Alzheon. Michael Kurnellas, new affiliation: Neuron23, Inc., South San Francisco, CA, USA. Lynette M Bustos, new affiliation: Ionis Pharmaceuticals, Inc., Carlsbad, CA, USA.
: The contents of this manuscript are based on discussions at the C9orf72 Summit and did not entail any animal or human subjects research that required review/approval by the IACUC or IRB. All patients and pre-symptomatic gene mutation carriers who participated and/or disclosed their gene mutation status, did so of their own volition.