top of page

Fundraiser October 2020

STEPS Fundraiser 2023

 October 1 -7, 2023 - virtual and local options 

4 million steps master graphic 1.png
4 million steps T-shirt design.png

Order your customized TEAM T-shirt or general event T-shirt by 9/15 to receive them on time for the event.
(Allow extra time for shipping outside the USA).

Welcome to the FOUR MILLION STEPS CLOSER TO #CURESDS fundraiser page.

  • When? October 1-7th, 2023

  • Where? Virtual! Run/Walk/Roll wherever you like! Plus local events hosted by community members.

  • What? Fun!!! Fundraise and Run/Walk/Roll in your community!

  • Why? To build community and raise funds for SDS research!

  • How? Register here!
     

With this fundraising campaign, we are raising funds to accelerate therapy and cure development for Shwachman-Diamond Syndrome, a rare genetic cancer predisposition disorder that affects thousands of children and adults worldwide.

Shwachman-Diamond Syndrome Alliance's mission is to accelerate therapy development and a cure for SDS - in particular, to eliminate the deadly leukemia risk in SDS - in a time frame that matters to our children and thousands of SDS patients worldwide. Our focus is research and development: we raise funds for the most cutting-edge research, build collaborations globally, and invest in critical research tools (such as the mouse project) and infrastructure, now.

 

Four million steps are certainly too much for any single person. But together, the steps add up. Together, we can get there!

And just like that, the steps challenge is upon us! 

See the leaderboard in the count.it app or right here on this page.

Instructions on how to join the steps challenge can be found below.

Have fun and see you there!

How to Join the Steps Challenge

[A printable version of these instructions is available here]

Thank you for joining the Three Million Steps Closer to #CureSDS fundraiser by starting a fundraiser or making a gift. Now it’s time to get moving! In the time period between October 9th-14th, count your steps with your favorite device/app. You don’t have to buy a device if you don’t already have one! Most smartphones have built-in or free pedometers/step counting/fitness apps available, and using the leaderboard tool (Count.it) is free, too!

 

How to Register to Participate in the Challenge

 

The registration consists of either starting a fundraiser on our donation platform (here) or making a donation on the same page. Please don't skip this step, as this is a fundraiser to support SDS research.

Note: These instructions are automatically emailed to all registered participants. Please don't distribute these instructions to non-registered participants. 

How to join the Steps Challenge via Count.it

 

We partnered with Count.it to power the challenge. The Count.it platform works with most popular fitness tracking apps, including Apple Health, Fitbit, Google Fit, Garmin, Strava, and RunKeeper. PRO TIP: iPhone users have Apple Health built-in. Most Android phones have Google Fit, or it can be downloaded here free of charge.

 
How to join our #CureSDS Group on Count.it

 

You can join our group (called #CureSDS) via the Count.it app or on the web. You can think of “group” sort of like an event. If you don't already use a fitness tracking app, it's great to get that set up first.

  • Option A) Join via the count.it App!

Download the count.it iOS app or Android app, click "Sign Up," and follow the prompts.

When asked, click the "Join a Group" option. You will be prompted to enter our group invitation code. Group Invite Code: [f60c2a55]. Or, you can go back and click on your Group Invitation Link https://www.countit.com/invite?group=f60c2a55 again, and the count.it app should be able to add you to the correct group. 

  • Option B) Join on the Web!

Simply click the invitation link https://www.countit.com/invite?group=f60c2a55 and follow the prompts to login or create an account if you are new to Count.it. If the link doesn't work, paste this URL into your web browser.

 

Alternatively to the invitation code, you may be able to search or enter our group name. The group name is #CureSDS.

 
How to join your favorite Team within the #CureSDS Group

 

NOTE: Teams will only be available during the challenge period starting on October 9th!!!

  • During onboarding, you will be prompted to join your team. Simply click the Join button to do so. 

  • If you don't see your team (which may happen at the beginning of the challenge period), don’t worry, you can join later. Your steps and other challenge contributions will add up to your team as soon as you join.

  • To see all the Teams in your group, and join one, just go to your Settings >Teams page. All available Teams within our #CureSDS group are listed here, and you can join or leave simply by clicking the button to the right of the team name.

Note for team captains: Our group allows "user generated"

teams. You can create a new team by clicking the "

+ Add Team" link at the top right of the teams list. 

How to join the challenges

 

NOTE: Challenges will only be available during the challenge period starting on October 9th!!!

 

Once the challenges are active, your step counts will automatically be added up to the challenge and your team if you join one.  

 

You're done! Have fun!

 

Since the event is virtual, there are plenty of safe options for observing any recommended COVID-19 precautions. You can even do the challenge at home.

 

Questions / Comments? Contact us at the SDS Alliance: connect@sdsalliance.org or +1-617-329-1838.

For technical questions, please first check out the Getting Started for Users and Count.it's General FAQ.

Screenshot 2022-10-09 030033.png
1.png
Shwachman-Diamond Syndrome Alliance Inc.

Social:

Email: connect@SDSAlliance.org

Phone: +1-617-329-1838

Mail: PO Box 2441, Woburn, MA 01888

  • Facebook
  • YouTube
  • LinkedIn
  • X
  • Instagram
  • TikTok
  • RSS

The Shwachman-Diamond Syndrome Alliance (SDS Alliance) is a 501(c)(3) nonprofit organization dedicated to building a world where Shwachman-Diamond Syndrome (SDS) is a manageable condition and all patients and their families can thrive - through driving research and engaging in advocacy and education.

 

The SDS Alliance brings together patient families, researchers, clinicians, and other diverse stakeholders to better understand, diagnose, and treat this devastating cancer predisposition genetic disorder. The SDS Alliance was launched in 2020 by the parents of a child with SDS, who are biomedical researchers and entrepreneurs.

 

The SDS Alliance’s leadership and scientific & medical advisors are experienced clinicians and researchers focused on combining the patient-family perspective with solutions based on the best available scientific evidence.

 

Families from around the world are fundamental to accelerating the SDS Alliance’s mission to improve outcomes for all SDS patients, especially populations from diverse backgrounds who don’t have possible stem-cell donor matches. The SDS Alliance intentionally elevates the voices of individuals from diverse backgrounds, the LGBTQ+ community, people with disabilities, and marginalized groups, as they bring critical insight and advance the SDS Alliance’s mission.

image.png
7f860ba1d0495100af7e993752c35c859e84d603-400x300.png
GuideStar-Bronze-2021-300x300.png
Partners
rare-as-one.png
Milken Institute FasterCures.png
20210418 The40perrcent logo ROCKET - white background.png
2019-08_DG_GG_CE-foundation-alliance-logo_V1.png
odc-logo-color-hires.jpg
membership_badge_plat.webp
the-jackson-laboratory-vector-logo.png
NICER_logo.png
SDSR_PMS300-Black square.png
Combined Brain Logo-color-web.webp
bottom of page