The ALS/MND Patient Fellows effort was created to enhance the opportunities for people with ALS/MND, care providers to people with ALS/MND and their families to participate in important scientific conferences and meetings about ALS/MND.
This was an idea that came out of lunchtime and cocktail hour conversations among peers at the 2016 International Symposium. Those conversations centered around how to:
- further the relationship between the ALS patient and the ALS researcher
- increase dissemination of ALS research information in the tones and voices of the ALS patient
- include more people with ALS in ALS research conversations leading to greater inclusion of their thoughts, opinions and ideas in research decisions, trial designs, etc.
These are big goals. Important goals. While we know that this program alone likely wont achieve them all, we aim to add a new dimension to advancing these ideals forward! And we are inspired by the impact that the PatientsIncluded movement has had and research that does suggest these types of efforts to include more patients themselves in science conferences does improve the outcomes from those conferences.
The Fellowship Selection Committee
- Cathy Collet
- Twitter @alsadvocacy
- Caregiver to Mom who died from ALS
- 2015 Med X ePatient Scholar
- Poster Presenter at 2016 International ALS/MND Symposium
- Andrea Lytle Peet
- Gudjon Singudsson
- Twitter @gaui_mnd
- Person with ALS
- Chairman of MND Iceland
- Paul Wicks, Ph.D.
- Stephen Winthrop
- Person with ALS
- Chairman, National Board of Trustees, ALS Association
2017 Patient Fellows
*Meg Macdonald passed away from ALS in May 2018.
How is the Fellowship Program Being Paid For?
This program is not solely with any individual organization or company. Several private individual donors have made charitable donations to cover the cost of entry fees, accommodations and other costs associated with this effort. The donations were made to the ALS Therapy Development Institute, who will manage the expenses part of this program as part of its mission. However, ALS TDI does not have control over who is selected as a Fellow nor editorial control or responsibility of the materials created by Fellows resulting from the Fellowship. If you would like to make a donation in support of the Patient Fellowship program, please contact Rob Goldstein at firstname.lastname@example.org.
(The Selection Committee would like to thank Eric Valor and Rob Goldstein for serving in 2017 on the committee. The Committee will turn over its members regularly. Rob will be managing logistics for the Committee though, so you’ll still see him on emails! )