What Information Do We Collect?
When you visit our website you may provide us with two types of information: personal information you knowingly choose to disclose that is collected on an individual basis and website use information collected on an aggregate basis as you and others browse our website.
Personal Information You Choose to Provide
We may request that you voluntarily supply us with personal information, including your email address, postal address, home or work telephone number and other personal information for such purposes as correspondence, placing an order, requesting an estimate, or participating in online surveys.
If you choose to correspond with us through email, we may retain the content of your email messages together with your email address and our responses. We provide the same protections for these electronic communications that we employ in the maintenance of information received by mail and telephone.
Website Use Information
Similar to other websites, our site may utilize a standard technology called "cookies" (see explanation below, "What Are Cookies?") and web server logs to collect information about how our website is used. Information gathered through cookies and server logs may include the date and time of visits, the pages viewed, time spent at our website, and the sites visited just before and just after ours. This information is collected on an aggregate basis. None of this information is associated with you as an individual.
How Do We Use the Information That You Provide to Us?
Broadly speaking, we use personal information for purposes of administering our business activities, providing service and support and making available other products and services to our customers and prospective customers. Occasionally, we may also use the information we collect to notify you about important changes to our website, new services and special offers we think you will find valuable. The lists used to send you product and service offers are developed and managed under our traditional standards designed to safeguard the security and privacy of all personal information provided by our users. You may at any time to notify us of your desire not to receive these offers.
What Are Cookies?
Cookies are a feature of web browser software that allows web servers to recognize the computer used to access a website. Cookies are small pieces of data that are stored by a user's web browser on the user's hard drive. Cookies can remember what information a user accesses on one web page to simplify subsequent interactions with that website by the same user or to use the information to streamline the user's transactions on related web pages. This makes it easier for a user to move from web page to web page and to complete commercial transactions over the Internet. Cookies should make your online experience easier and more personalized.
How Do We Use Information Collected From Cookies?
We use website browser software tools such as cookies and web server logs to gather information about our website users' browsing activities, in order to constantly improve our website and better serve our users. This information assists us to design and arrange our web pages in the most user-friendly manner and to continually improve our website to better meet the needs of our users and prospective users.
Cookies help us collect important business and technical statistics. The information in the cookies lets us trace the paths followed by users to our website as they move from one page to another. Web server logs allow us to count how many people visit our website and evaluate our website's visitor capacity. We do not use these technologies to capture your individual email address or any personally identifying information about you.
Notice of New Services and Changes
Occasionally, we may use the information we collect to notify you about important changes to our website, new services and special offers we think you will find valuable. As a user of our website, you will be given the opportunity to notify us of your desire not to receive these offers by clicking on a response box when you receive such an offer or by sending us an email request.
How Do We Secure Information Transmissions?
When you send confidential personal information to us on our website, a secure server software which we have licensed encrypts all information you input before it is sent to us. The information is scrambled en route and decoded once it reaches our website.
Other email that you may send to us may not be secure unless we advise you that security measures will be in place prior to your transmitting the information. For that reason, we ask that you do not send confidential information such as Social Security, credit card, or account numbers to us through an unsecured email.
How Do We Protect Your Information?
Information Security -- We utilize encryption/security software to safeguard the confidentiality of personal information we collect from unauthorized access or disclosure and accidental loss, alteration or destruction.
Evaluation of Information Protection Practices -- Periodically, our operations and business practices are reviewed for compliance with organization policies and procedures governing the security, confidentiality and quality of our information.
Employee Access, Training and Expectations -- Our organization values, ethical standards, policies and practices are committed to the protection of user information. In general, our business practices limit employee access to confidential information, and limit the use and disclosure of such information to authorized persons, processes and transactions.
How Can You Access and Correct Your Information?
You may request access to all your personally identifiable information that we collect online and maintain in our database by emailing us using the contact form provided to you within the site structure of our website.
Do We Disclose Information to Outside Parties?
What About Legally Compelled Disclosure of Information?
We may disclose information when legally compelled to do so, in other words, when we, in good faith, believe that the law requires it or for the protection of our legal rights.
Permission to Use of Materials
The right to download and store or output the materials in our website is granted for the user's personal use only, and materials may not be reproduced in any edited form. Any other reproduction, transmission, performance, display or editing of these materials by any means mechanical or electronic without our express written permission is strictly prohibited. Users wishing to obtain permission to reprint or reproduce any materials appearing on this site may contact us directly.
We are grateful for your donation and support of our organization. If you have made an error in making your donation or change your mind about contributing to our organization please contact us. Refunds are returned using the original method of payment. If you made your donation by credit card, your refund will be credited to that same credit card.
Automated Recurring Donation Cancellation
Ongoing support is important to enabling projects to continue their work, so we encourage donors to continue to contribute to projects over time. But if you must cancel your recurring donation, please notify us.
#HSPandPLS Awareness Week August 23-29, 2020 Hosted by the Spastic Paraplegia Foundation Awareness Week takes place from August 23 - 29, 2020. The theme is “Challenge”. #HSPandPLS Awareness Week is a global inspiration to actively promote the message of rare disease medical research for #HSPandPLS. What can you do for #HSPandPLS Awareness Week? Get Going, Take the Challenge!
During Awareness Week, each day events take place around the world to raise awareness for #HSPandPLS. Many people create fundraisers to raise money for medical research with the Spastic Paraplegia Foundation. Join us each day at Noon, CDT for a global zoom visit for 30-minutes to help drive the conversation on #HSPandPLS and create a lasting challenge reaching out to our family of #HSPandPLS to help raise funds for medical research. Join the Zoom link here: (To be determined.)
What are the Daily Challenges for #HSPandPLS Awareness Week? Download #HSPandPLS Awareness Week flyer at this link: https://sp-foundation.org/get-involved/awareness-week/ --Sunday, Sport’s Day - 5K, GET AN A-THON GOING-Bike-a-thon, roll-a-thon, dance-a-thon, walk-a-thon, Wear your favorite sports team clothing, video yourself playing ping pong cup game, sport or A-Thon.
--Monday, Creative Arts Day - Do something artsy, musically, or creatively
--Tuesday, Sunglasses Day - Strike a pose in your favorite pair of sunglasses
--Wednesday, Super Hero Day - Honor one of your real life heroes (mom, dad, caregiver, fireman, police, nurse, pastor, etc.), Superman, Batman, Wonder Women, Spider Man etc.
--Thursday, Swag Day - Wear your favorite SPF swag colors or Tshirt
--Friday, Wacky Sock Day - Show off your fav wackiest socks, mismatched socks, or outfit, or someone you love wearing one of these
--Saturday, Sun Fun Day - Do a fun activity outside, even if it’s sitting on the porch, at a picnic table, beach, overlooking a mountain top Donate: Make your Awareness Challenge Count by Donating to Medical Research What Resources Are Available
SPF has a range of resources to help you find answers. Click here to discover a wealth of information on #HSPandPLS. Direct people to this link: https://sp-foundation.org/news-resources/
Stories – how people are getting involved!
People tell us stories of their challenges with #HSPandPLS Awareness, plus a roundup of online support! See the list of social media supporting spastic paraplegia on the SPF home page here. Direct people to this link: https://sp-foundation.org/
How Can I Fundraise during #HSPandPLS Awareness Week?
The Spastic Paraplegia Foundation is a charity that relies on private and public donations and grant funding to help fund medical research for those with #HSPandPLS. Donate to help fund medical research for #HSPandPLS by credit card, by clicking here: Direct people to this link: https://sp-foundation.networkforgood.com/projects/22291-spastic-paraplegia-foundation
Create a fundraising activity, like one of these listed.
(1) Virtual 5K Run Walk or Roll
Create a team by recruiting family and friends to participate. Using creative calculating, convert your time with a physical therapist, stretching or exercising toward a Virtual 5K. The average person can walk 3.1 miles in about an hour. Whatever you do for physical activity, count the time toward a Virtual 5K. Please make sure you check with your healthcare professional before doing anything new. Family and friends can help you raise funds by sponsoring your FUNraising 5K activities. For more information on Virtual 5K, click here. (2) Virtual Tea & Talk
We know thousands of you love Tea & Talking, so why not host one online? You can sign up for a nominal donation, get friends, family, and colleagues to join you with a virtual cup. Each person can pay a small amount to join, or whatever they feel comfortable donating.
(3) Virtual Wine Wednesday
Similar to Tea and Talk, Wine Wednesday is another great way to keep connected with others to discuss various wines. Together you can decide what your favorite wine is and donate the cost of a bottle of wine to SPF.
(4) Virtual Friday Night Cocktails
Used to having a drink with colleagues or friends on a Thursday or Friday night? You still can! Have a drink together online and each person can donate the price of their favorite drink to SPF.
(5) Facebook Fundraiser
Create your own fundraising naming Spastic Paraplegia Foundation as the “Nonprofit” cause, click here to exit to Facebook. Direct people to link: https://www.facebook.com/fundraisers?create&source=help_center_how_to_create_fundraise
(6) Use AmazonSmile: You shop. Amazon gives.
Every time you want to place an order on Amazon.com, use Smile.Amazon.com. It is the same website operated by Amazon with the same products, prices, and shopping features as Amazon.com. The difference is that when you shop on AmazonSmile, the AmazonSmile Foundation will donate 0.5% of the purchase price of eligible products to the Spastic Paraplegia Foundation, Inc. http://bit.ly/smileSPF
How can I get involved? What resources are available? All your key questions about #HSPandPLS answered by clicking here. Direct people to link: SP-Foundation.org
The new SPF Store is open! Many items are available.