Help raise money for HSP and PLS medical research

Join us in supporting real change. Let’s support good in the world and make a difference. Help us to raise funds to find a cure for #HSPandPLS through the Spastic Paraplegia Foundation.

As many of you know, Sue has been diagnosed with a rare motoneuron disease called Hereditary Spastic Paraplegia. It affects gait, causes muscle spasticity, pain, and in some cases, speech is impacted.There are almost 90 different types of HSP and even one that affects the very young where children have a life expectancy of 6 years and still other youngsters are in wheelchairs. I guess we could say fortunately it is a rare disease with about 20,000 known cases in the USA, but with rare diseases it is tough to get funding for research.

We recently attended a conference with many Neuroscientists and Neurologists committed to finding a cure for HSP. We were excited at the research going on - and the more research we can support, the quicker a cure can be discovered.

The SP Foundation is hosting a 5K during Rare Disease Awareness Week, August 21-28, 2022 and in an effort to do our part, we are asking friends, family and neighbors to participate in a virtual 5K. Our date is August 27^th but you can pick your own date. You don’t have to even run, walk, swim, bike or roll – just click the DONATE button and do what you can to help. If you’d like to virtually participate, register via the links on this page. And please send pictures.

Sue will be riding the indoor bike each day of that week for 5K, so 35k in total, and has set a goal to walk 5K during the week. And of course, Ed will be matching that. Please join us and HELP US FIND A CURE.

Welcome to the SPF 5K Registration. There are 3 ways to REGISTER:
(1) Register by Donating through the main page “5K Fourth Annual Challenge for SPF” or
(2) Start your own Fundraising Team and change up your photos in the back-office, or
(3) Register by Donating to a Team account already created by your family or friends.

See these details for each of the three options:
(1) Register by Donating through the main page “5K Fourth Annual Challenge for SPF” (without creating an account). Click the faded out DONATE button.

(2) Register by Starting your own Fundraising Team, setting up your very own fundraising page by clicking the green START FUNDRAISING which leads to “Log in with a social network, or create a new account”

(3) Register by Donating to Team Accounts called Campaigns which have already been created by your family or friends. Search for Existing Campaigns by scrolling to the BOTTOM of this page. See below


CHOICES: Regardless of how you registered, donate $25, called a Registration Fee and each registrant receives a Race Bib showing support for #HSPandPLS 5K activities. The money raised will be used to fund medical research for #HSPandPLS.

CALL TO ACTION: Each participant paying $25 by August 6th will receive a downloadable, printable SPF LOGO Race Bib. Each participant (USA or International) that raises or contributes a total of $100 or more, includes registration fee, will receive a free SPF tshirt.

DONATIONS:
(1) Registration fees and donations in US$ can be submitted online to the SP-Foundation.org website at http://bit.ly/2QPLQpDSPFDonate (Select One-Time Donation; Apply to 5K Run, Walk, Ride or Roll).

(2) Donations can also be accepted through the Charity GoFundMe to the SP-Foundation at this link: https://charity.gofundme.com/o/en/campaign/find-a-cure-hspandpls-awareness