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HSP & PLS
New to SPF?
Welcome!
Website Tour
Join/Update
Overview
What is an hereditary disorder?
HSP
About HSP
Genetic Information
SPG Numbers and Molecular Pathways
Videos/Blogs/Podcasts
Articles/Papers/Studies
Treatments and Therapies
PLS
SPF Role in PLS Research
PLS Overview
Almost everything you wanted to know about PLS in four minutes
Juvenile PLS
A Work in Progress
Articles/Papers/Studies
Differences between HSP and PLS
Get Involved
Overview
SPF Survey on HSP/PLS
HSP and PLS Survey Results
Donate Here
Many Ways to Donate
The Power of 12: You’ve Been Challenged
Current Fundraising Campaigns
Estate Planning & Wills
Memorial Giving Honoring Love Ones
Become a Corporate Sponsor
Events
Events Calendar
List of Events
Annual Conference
Overview
Annual Conference Sponsorships
Past Annual Conferences
Local Events and Fundraisers
5K Run, Walk Roll
Overview
Potato Pants
Past Events / Fundraisers / Connections
SPF Talks
Overview
July 8, 2026
Advocacy
Overview
How to Help
Current Campaigns
Related Organizations & Podcasts
Brain & Spinal Cord Donation
Spreading Awareness
Kids & Teens with HSP
Childhood Onset HSP
Kids and Teens with HSP Hanbooks
Kids and Teens with HSP
HSP Childhood Onset Survey 2022
HSP Childhood Onset Survey 2026
Current Studies Seeking Participants
Ambassadors
Overview
Ambassador Volunteer Information
Support Groups
Volunteer on a Committee
SPF Store
Resources
Overview
Join/Update
Directories
Ambassadors
Physician/Clinic Directory
Physical Therapists
Genetic Testing and International Organizations
Genetic Testing
International Organizations
Helpful Websites
HSP San Diego
Bespoke Genetic Medicines - CureSPG75
Our Partner Organizations
Overview
Patient Worthy
Global Genes
Euro-HSP
AEPEF
ASPEC Brasil
Self Help Guides
Stretching and Exercises
Surgical Anesthesia in HSP and PLS
Incontinence
Accessible Parking
Miscellaneous
Newsletter
Synapse
HSP & PLS Informational Documents
Government Aid & Charity Programs
SPF YouTube Channel
Research
Overview
SP-CERN
SP-CERN
SP-CERN LOCATIONS
SP-CERN Research
Current Studies Seeking Participants
Completed Research
Completed Research
Imaging of neuro-inflammation in PLS, HSP, and ALS
Mapping Cortical and Subcortical Degeneration in PLS
Research Grants Funded
Research Grants Funded in 2025
Research Grants Funded between 2021 - 2024
Research Grants Funded Between 2003 - 2020
Submit Proposal
Invitae SP/PLS Insights Network
The Foundation
Overview
Our History
Board of Directors
Scientific Advisory Board
Corporate Documents
Media
Public Service Announcements
Rare Disease Day at NIH 2026
October 17: World HSP/PLS Day
All About World HSP & PLS Day
World HSP & PLS Day
World Day Videos
World Day Symbol
List of Events
Click the Event Title for more information
Pampered Chef Fundraiser
Saturday, August 1, 2026
Monday, August 31, 2026
Add To My Calendar
PLS Support Group sponsored by the ALS Association
Saturday, August 1, 2026
10:00 am PDT
11:00 am PDT
https://als-org.zoom.us/j/82879731716
Add To My Calendar
Dr. Fink's Neurological Support Group - There is no meeting this month.
Meets on the First Tuesday of Every Month at 6:30 PM – 8 PM Eastern Time (US and Canada)
Read the disclaimer
Add To My Calendar
Joint Committee Zoom Work of the SPFoundation (1st Thursday) - (Times in EST)
Thursday, August 6, 2026
8:00 pm
9:00 pm
Register - Click Here
Add To My Calendar
HSP & PLS Awareness Day
Thursday, August 27, 2026
Add To My Calendar
Dr. Fink's Neurological Support Group
Meets on the First Tuesday of Every Month at 6:30 PM – 8 PM Eastern Time (US and Canada)
Read the disclaimer
Add To My Calendar
Joint Committee Zoom Work of the SPFoundation (1st Thursday) - (Times in EST)
Thursday, September 3, 2026
8:00 pm
9:00 pm
Register - Click Here
Add To My Calendar
PLS Support Group sponsored by the ALS Association
Saturday, September 5, 2026
10:00 am PDT
11:00 am PDT
https://als-org.zoom.us/j/82879731716
Add To My Calendar
Golfing for Rare Diseases 11th Annual
Saturday, September 12, 2026
1 Torrey Pines Dr
Ledbetter,
KY
42058
US
Add To My Calendar
Joint Committee Zoom Work of the SPFoundation (1st Thursday) - (Times in EST)
Thursday, October 1, 2026
8:00 pm
9:00 pm
Register - Click Here
Add To My Calendar
PLS Support Group sponsored by the ALS Association
Saturday, October 3, 2026
10:00 am PDT
11:00 am PDT
https://als-org.zoom.us/j/82879731716
Add To My Calendar
Dr. Fink's Neurological Support Group
Meets on the First Tuesday of Every Month at 6:30 PM – 8 PM Eastern Time (US and Canada)
Read the disclaimer
Add To My Calendar
World Day of HSPandPLS
Saturday, October 17, 2026
All day Zoom Meeting
Add To My Calendar
Annual Year End Matching Donor Program
Sunday, November 1, 2026
Thursday, December 31, 2026
End of the Year Appeal
Add To My Calendar
Dr. Fink's Neurological Support Group
Meets on the First Tuesday of Every Month at 6:30 PM – 8 PM Eastern Time (US and Canada)
Read the disclaimer
Add To My Calendar
Joint Committee Zoom Work of the SPFoundation (1st Thursday) - (Times in EST)
Thursday, November 5, 2026
8:00 pm
9:00 pm
Register - Click Here
Add To My Calendar
PLS Support Group sponsored by the ALS Association
Saturday, November 7, 2026
10:00 am PST
11:00 am PST
https://als-org.zoom.us/j/82879731716
Add To My Calendar
Dr. Fink's Neurological Support Group
Meets on the First Tuesday of Every Month at 6:30 PM – 8 PM Eastern Time (US and Canada)
Read the disclaimer
Add To My Calendar
Giving Tuesday
Wednesday, December 2, 2026
Giving Tuesday
Add To My Calendar
Joint Committee Zoom Work of the SPFoundation (1st Thursday) - (Times in EST)
Thursday, December 3, 2026
8:00 pm
9:00 pm
Register - Click Here
Add To My Calendar
PLS Support Group sponsored by the ALS Association
Saturday, December 5, 2026
10:00 am PST
11:00 am PST
https://als-org.zoom.us/j/82879731716
Add To My Calendar
PLS Support Group sponsored by the ALS Association
Saturday, January 2, 2027
10:00 am PST
11:00 am PST
https://als-org.zoom.us/j/82879731716
Add To My Calendar
Dr. Fink's Neurological Support Group
Meets on the First Tuesday of Every Month at 6:30 PM – 8 PM Eastern Time (US and Canada)
Read the disclaimer
Add To My Calendar
Joint Committee Zoom Work of the SPFoundation (1st Thursday) - (Times in EST)
Thursday, January 7, 2027
8:00 pm
9:00 pm
Register - Click Here
Add To My Calendar
Dr. Fink's Neurological Support Group
Meets on the First Tuesday of Every Month at 6:30 PM – 8 PM Eastern Time (US and Canada)
Read the disclaimer
Add To My Calendar
Joint Committee Zoom Work of the SPFoundation (1st Thursday) - (Times in EST)
Thursday, February 4, 2027
8:00 pm
9:00 pm
Register - Click Here
Add To My Calendar
PLS Support Group sponsored by the ALS Association
Saturday, February 6, 2027
10:00 am PST
11:00 am PST
https://als-org.zoom.us/j/82879731716
Add To My Calendar
Rare Disease Day
Sunday, February 28, 2027
Add To My Calendar
Dr. Fink's Neurological Support Group
Meets on the First Tuesday of Every Month at 6:30 PM – 8 PM Eastern Time (US and Canada)
Read the disclaimer
Add To My Calendar
Joint Committee Zoom Work of the SPFoundation (1st Thursday) - (Times in EST)
Thursday, March 4, 2027
8:00 pm
9:00 pm
Register - Click Here
Add To My Calendar
PLS Support Group sponsored by the ALS Association
Saturday, March 6, 2027
10:00 am PST
11:00 am PST
https://als-org.zoom.us/j/82879731716
Add To My Calendar
Joint Committee Zoom Work of the SPFoundation (1st Thursday) - (Times in EST)
Thursday, April 1, 2027
8:00 pm
9:00 pm
Register - Click Here
Add To My Calendar
PLS Support Group sponsored by the ALS Association
Saturday, April 3, 2027
10:00 am PDT
11:00 am PDT
https://als-org.zoom.us/j/82879731716
Add To My Calendar
Dr. Fink's Neurological Support Group
Meets on the First Tuesday of Every Month at 6:30 PM – 8 PM Eastern Time (US and Canada)
Read the disclaimer
Add To My Calendar
5K Run, Walk or Roll
Saturday, May 1, 2027
Sunday, October 31, 2027
Add To My Calendar
PLS Support Group sponsored by the ALS Association
Saturday, May 1, 2027
10:00 am PDT
11:00 am PDT
https://als-org.zoom.us/j/82879731716
Add To My Calendar
Dr. Fink's Neurological Support Group
Meets on the First Tuesday of Every Month at 6:30 PM – 8 PM Eastern Time (US and Canada)
Read the disclaimer
Add To My Calendar
Joint Committee Zoom Work of the SPFoundation (1st Thursday) - (Times in EST)
Thursday, May 6, 2027
8:00 pm
9:00 pm
Register - Click Here
Add To My Calendar
Dr. Fink's Neurological Support Group
Meets on the First Tuesday of Every Month at 6:30 PM – 8 PM Eastern Time (US and Canada)
Read the disclaimer
Add To My Calendar
Joint Committee Zoom Work of the SPFoundation (1st Thursday) - (Times in EST)
Thursday, June 3, 2027
8:00 pm
9:00 pm
Register - Click Here
Add To My Calendar
PLS Support Group sponsored by the ALS Association
Saturday, June 5, 2027
10:00 am PDT
11:00 am PDT
https://als-org.zoom.us/j/82879731716
Add To My Calendar
Joint Committee Zoom Work of the SPFoundation (1st Thursday) - (Times in EST)
Thursday, July 1, 2027
8:00 pm
9:00 pm
Register - Click Here
Add To My Calendar
PLS Support Group sponsored by the ALS Association
Saturday, July 3, 2027
10:00 am PDT
11:00 am PDT
https://als-org.zoom.us/j/82879731716
Add To My Calendar
Dr. Fink's Neurological Support Group
Meets on the First Tuesday of Every Month at 6:30 PM – 8 PM Eastern Time (US and Canada)
Read the disclaimer
Add To My Calendar
HSP & PLS
New to SPF?
Welcome!
Website Tour
Join/Update
Overview
What is an hereditary disorder?
HSP
About HSP
Genetic Information
SPG Numbers and Molecular Pathways
Videos/Blogs/Podcasts
Articles/Papers/Studies
Treatments and Therapies
PLS
SPF Role in PLS Research
PLS Overview
Almost everything you wanted to know about PLS in four minutes
Juvenile PLS
A Work in Progress
Articles/Papers/Studies
Differences between HSP and PLS
Get Involved
Overview
SPF Survey on HSP/PLS
HSP and PLS Survey Results
Donate Here
Many Ways to Donate
The Power of 12: You’ve Been Challenged
Current Fundraising Campaigns
Estate Planning & Wills
Memorial Giving Honoring Love Ones
Become a Corporate Sponsor
Events
Events Calendar
List of Events
Annual Conference
Overview
Annual Conference Sponsorships
Past Annual Conferences
Local Events and Fundraisers
5K Run, Walk Roll
Overview
Potato Pants
Past Events / Fundraisers / Connections
SPF Talks
Overview
July 8, 2026
Advocacy
Overview
How to Help
Current Campaigns
Related Organizations & Podcasts
Brain & Spinal Cord Donation
Spreading Awareness
Kids & Teens with HSP
Childhood Onset HSP
Kids and Teens with HSP Hanbooks
Kids and Teens with HSP
HSP Childhood Onset Survey 2022
HSP Childhood Onset Survey 2026
Current Studies Seeking Participants
Ambassadors
Overview
Ambassador Volunteer Information
Support Groups
Volunteer on a Committee
SPF Store
Resources
Overview
Join/Update
Directories
Ambassadors
Physician/Clinic Directory
Physical Therapists
Genetic Testing and International Organizations
Genetic Testing
International Organizations
Helpful Websites
HSP San Diego
Bespoke Genetic Medicines - CureSPG75
Our Partner Organizations
Overview
Patient Worthy
Global Genes
Euro-HSP
AEPEF
ASPEC Brasil
Self Help Guides
Stretching and Exercises
Surgical Anesthesia in HSP and PLS
Incontinence
Accessible Parking
Miscellaneous
Newsletter
Synapse
HSP & PLS Informational Documents
Government Aid & Charity Programs
SPF YouTube Channel
Research
Overview
SP-CERN
SP-CERN
SP-CERN LOCATIONS
SP-CERN Research
Current Studies Seeking Participants
Completed Research
Completed Research
Imaging of neuro-inflammation in PLS, HSP, and ALS
Mapping Cortical and Subcortical Degeneration in PLS
Research Grants Funded
Research Grants Funded in 2025
Research Grants Funded between 2021 - 2024
Research Grants Funded Between 2003 - 2020
Submit Proposal
Invitae SP/PLS Insights Network
The Foundation
Overview
Our History
Board of Directors
Scientific Advisory Board
Corporate Documents
Media
Public Service Announcements
Rare Disease Day at NIH 2026
October 17: World HSP/PLS Day
All About World HSP & PLS Day
World HSP & PLS Day
World Day Videos
World Day Symbol
Join/Update
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