Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

Day of Hope Guide

Details

Engage Your Community to Support Rare Families

Anyone can participate in NTSAD’s Day of Hope to raise awareness and critical funds toward research for Tay-Sachs, Canavan, GM1, and Sandhoff diseases by creating a Day of Hope giving page.

You can Walk a Mile for Hope, create a Day of Hope giving page, or host your own event! We are here to help you engage your family, friends, colleagues, customers, and vendors in supporting a Day of Hope to advance research.

An easy way to get involved this year: Join the NTSAD Community on Saturday, September 17, 2022, and Walk a Mile for Hope in your neighborhood. While you walk, post a photo or video on Facebook, tag the NTSAD Facebook page, and use #NTSADDOH22. This year, we are also launching a new tool for participants: personal Day of Hope fundraising pages. You can create your own fundraising page, set a personal goal, share your story, and advertise your Day of Hope activity or event! Help us reach our goal of raising $55,000 for the Research Initiative! Create your page here: https://bit.ly/3zZNho6

(Instructions on creating your page:   pdf NTSAD Day of Hope Fundraising Page (241 KB) ) 

Thanks to Our Community, more than $600,000 has been raised for research since our First Annual Day of Hope in 2011. This year marks the 12th Anniversary of Day of Hope, and with several active drug development and clinical trials we are closer than ever to finding effective treatments. But there is more work to be done!

Day of Hope fundraisers and events unite people in our shared cause. Together we can make a difference.

We Can Help Make Your Event a Success!

We sincerely thank you for your interest in hosting an event! There are many ways the NTSAD team can support your efforts. We can help you with ideas, planning, timelines, marketing materials, raising money, and more!

When is Day of Hope?

Any day can be a Day of Hope—weekdays, evenings, weekends, or ongoing events. All efforts are important and make an impact. Day of Hope events are typically held from July through October. On September 17, 2022, NTSAD will be celebrating our NTSAD Community and our collective Day of Hope efforts to raise awareness and funds for research.

Promoting Your Activity or Event

We have marketing and event content you can personalize and share via pamphlets, mailings, flyers, emails, digital invites, and social media. We also have NTSAD banners and swag items to give away as prizes or gifts, including car decals and reusable grocery bags.

Activities and Event Ideas

In the past, families have hosted dance marathons, walk/runs, motorcycle rides, golf tournaments, lemonade stands, carnivals, BBQ’s, pancake breakfasts, poker nights, and more. Some families choose to spread awareness and raise funds through a personalized, online campaign via email or Facebook, which is easy to do and does all the work for you! Families and companies also purchase and promote Day of Hope T-shirts where a portion of proceeds go to NTSAD.

The NTSAD team can offer suggestions that fit any group’s style. In a time of social distancing, we have event ideas that work in-person or virtually. Whether you’re staying home, working remotely, wanting to get outside, or looking to connect with friends, family, and colleagues, across the country the following examples are some events you can do almost anywhere, safely.

  • Create a Facebook fundraiser or simply email your friends and family with your story and fundraising goal and NTSAD can create a personalized link and giving page so donations go directly to NTSAD.
  • Work with NTSAD to customize your very own Day of Hope t-shirt to promote to your network so they can purchase directly online. (A portion of proceeds go to NTSAD.)
  • Challenge your friends and family to support you by making a pledge to walk/run a certain number of steps or distance in your neighborhood by a certain date. They can make a donation per mile, or for the total distance. Even better, have them join you and raise money with you! You can hike or bike, too!
  • Hold a virtual or in-person trivia night. (There are many trivia games available at Amazon and other stores as well as online games to support you.)
  • Plan a Happy Hour with themed cocktails where people pay to attend either virtually or in person.
  • Host a Bingo Party either in person or virtually. Charge people to play each game or the whole night!
  • Organize an online raffle or auction.
  • Host a dance party where you or a friend are the DJ. People can make donations to dance. Hold in-person outside or virtually.
  • Create an original activity that speaks to you, your family, or company!
  • Any activity or event helps spread awareness and shows that you care for rare!

 

HOW THE NTSAD TEAM CAN HELP!!

Planning an event can be daunting – but it does not have to be! We are here to help you from beginning to end with planning, promotion, organizing, hosting, and fundraising.

The NTSAD team can help you with the following:

  • Creating a personalized Day of Hope Page 
  • Brainstorming concepts and ideas
  • Planning an event
  • Creating a timeline
  • Designing and customizing marketing materials both printed and online
  • Ordering t-shirts and swag/giveaways
  • Fundraising including letters for solicitations for support
  • Applying to companies and foundations for grants and sponsorships
  • Recognizing and thanking your supporters

 

The NTSAD Team

Becky Benson, Family Services Manager.. Don’t know where to start?  Becky can help you get with ideas, planning, marketing materials, swag, etc. She and her family host Day of Hope events, and Becky plans the Annual Family Conference and has experience holding both in-person and virtual events. Email This email address is being protected from spambots. You need JavaScript enabled to view it..

Sydnie Dimond, Development and Communications Manager. Sydnie can help you with setting up anything online or using social media whether it is a Facebook fundraiser, personal giving link, or email campaign. She also can help you track donations and thank donors. She also has great ideas for virtual walk/runs using apps. Email This email address is being protected from spambots. You need JavaScript enabled to view it..

Susan Keliher, Director of Development and Communications. Susan has planned many corporate events and secured scores of grants. She can help companies plan Day of Hope events as well as secure sponsorships and press opportunities for families. Email This email address is being protected from spambots. You need JavaScript enabled to view it..

Diana Pangonis, Director of Family Services. Diana can also help with event ideas and sharing your personal story. She also can answer questions about research and clinical trials as well as provide information about diseases. Email This email address is being protected from spambots. You need JavaScript enabled to view it..

 

Hosting Online Day of Hope Campaigns

Looking for an easy way to support the Day of Hope and spread awareness of rare and NTSAD? Want to include friends and family from all over? A Day of Hope t-shirt campaign or Day of Hope fundraising page can be personalized to help you to meet your goals while using your preferred method of communication or social media platform.

Sometimes, getting started is the hardest part. We have complied a list of helpful tools for online campaigns, so that it can be as easy, interactive, and fun as possible. Choose any or more than one of the following tools and make a difference during this year’s Season of Hope!    

Create a Day of Hope Page

You can create your own Day of Hope fundraising page, set a personal goal, share your story, and advertise your Day of Hope activity or event! if you're walking a Mile of Hope on September 17, share what you're hopeful for on your page! Help us reach our goal of raising $55,000 for the Research Initiative!

Create your page here: https://bit.ly/3zZNho6

Instructions on creating your page:  pdf NTSAD Day of Hope Fundraising Page (241 KB)

Purchase a NTSAD Day of Hope T-Shirt

Purchase a NTSAD Day of Hope t-shirt and a portion of the proceeds go to NTSAD’s Research Initiative. Click here to view the shirts. Share with your family and friends via email, text, or social media and ask them to purchase one, too.

Create Your Own Day of Hope T-Shirt

Click here to go to NTSAD’s create your own Day of Hope t-shirt campaign! A portion of proceeds go to NTSAD’s Research Initiative.

Choose option 1 to start with NTSAD’s Day of Hope t-shirt template and add your team name, or your child/loved one’s name, or your company name.

OR

Choose option 2 to create your own design.

Follow the instructions to design your shirt and set up your campaign, and then share the link to the shirts with friends and family and colleagues on social media, through email, or text!                       

Email Template

Another option for reaching family and friends online is through email. Copy and paste the template below into an email and then personalize it. Email it to your friends and family.

Subject: Please Support NTSAD and Rare Families

Dear _______,

Please consider joining me in supporting National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD). Each year, NTSAD hosts Day of Hope which funds research seeking effective treatments for individuals diagnosed with Tay-Sachs, Canavan, GM1, and Sandhoff diseases. Your contribution will make an impact, whether you donate $5 or $500, and it would mean a lot to me. Make a donation now at: [insert like to your Day of Hope page link]

Thanks to generous donors NTSAD’s Day of Hope has raised more than $600,000 in support of research to date—a remarkable achievement!

Add details about your personal experience with NTSAD (optional.)

NTSAD leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community.

This year marks the 12th Anniversary of Day of Hope, and with several drug development and clinical trials underway, we are truly in a Season of Hope!

Since 2002, NTSAD’s Research Initiative has made direct investments of more than $4 million in grants that have been leveraged to more than $30 million of investments in additional research, leading to new therapies.

Thank you for supporting NTSAD. Your donation helps many rare families affected by Tay-Sachs, Canavan, GM1, and Sandhoff diseases find hope for a future with effective treatments.

Sample Content for Sharing your Day of Hope Page:

Want to join me in supporting a good cause? I'm raising money for National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD)’s Day of Hope and your contribution will make an impact, whether you donate $5 or $500. Every little bit helps. Thank you for your support.

[Include your personal story or connection to rare and NTSAD here.]

The proceeds from the Day of Hope enable NTSAD to fund research seeking effective treatments for individuals diagnosed with Tay-Sachs, Canavan, GM1, and Sandhoff diseases. Thanks to generous donors NTSAD’s Day of Hope has raised more than $560,000 in support of research to date—a remarkable achievement!

NTSAD leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.

This year marks the 12th Anniversary of Day of Hope, and with 14 active drug development and clinical trials, we are truly in a Season of Hope!

Since 2002, NTSAD’s Research Initiative has made direct investments of more than $4 million in grants that have been leveraged to more than $30 million of investments in additional research, leading to new therapies.

Facebook pays all the processing fees for you, so 100% of your donation goes directly to the nonprofit. And if you decide to give, you can choose who can see that you donated or donate privately.

How to Raise Awareness and Funds on Facebook

  • Share your personal story or connections. Why are you spreading awareness and raising money for NTSAD? Include photos of yourself or your loved one, and a link to give.
  • Want to educate your friends and family? Share our “Be Rare Aware” infographics, which can be found on the NTSAD Facebook page throughout September or on our website at www.ntsad.org.
  • After giving a personal donation, ask your friends to match you gift:
    • I just donated $20 to NTSAD. NTSAD leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. NTSAD’s Day of Hope’s goal is to raise $50,000 to support research, so we can find treatments for these diseases! Will you match my gift by giving $20 now? https://bit.ly/3zZNho6 or add your personalize Day of Hope Page link
  • Sharable facts:
    • NTSAD’s Research Initiative has made direct investments of more than $4 million in grants that have been leveraged to more than $30 million of investments in additional research, leading to new therapies. Make a gift today to support my Day of Hope fundraising efforts! https://bit.ly/3zZNho6 or add your personalize Day of Hope Page link
    • Currently, there are several drug development programs and clinical trials underway, and industry continues to invest in developing therapies for Tay-Sachs, Canavan, GM1 gangliosidosis, and Sandhoff diseases. Help us continue the hope for treatments! Give the gift of the future! https://bit.ly/3zZNho6 or add your personalize Day of Hope Page link
  • Download NTSAD’s Day of Hope infographics! These can be found below, or saved from the NTSAD Facebook page.
  • Join the NTSAD Community on Saturday, September 17, 2022, and Walk a Mile for Hope in your neighborhood. While you walk, post a photo or video on Facebook, tag the NTSAD Facebook page, and use #NTSADDOH22. Add https://bit.ly/3zZNho6 toy our post or your personalize Day of Hope Page link

Spread Awareness and Add a Facebook Profile Picture Frame

Show your support by adding the Day of Hope frame to your Facebook profile picture!

You can add a frame here: https://twibbon.com/Support/ntsads-day-of-hope-2022

How to Start a Facebook Fundraiser for NTSAD’s Day of Hope

  1. On your computer, login to Facebook.
  2. On the left, click “Fundraisers” (you may need to scroll down to find it).
  3. On the left, click “Raise money.”
  4. Click “Nonprofit.”
  5. Type in “National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD)” into the search bar.
  6. Select “NTSAD.”
  7. On the left, enter: The goal amount of money you want to raise.
  8. The currency in which you prefer funds (i.e. dollars).
  9. Make any changes you want to the title of your fundraiser or the description: i.e. change title to “Jane’s Fundraiser for NTSAD’s Day of Hope.”
  10. Click “Create.”
  11. You’ll see a screen pop up where you can invite your friends to donate to your fundraiser, share your fundraiser in your news feed, or donate to the fundraiser yourself.

Use Instagram Story Options to Raise Awareness and Money

Create stories to spread awareness and add a link to https://bit.ly/3zZNho6 or your own Day of Hope Page link.

Download NTSAD’s Day of Hope infographics! These can be found below or saved from the NTSAD Facebook page. 

Day of Hope Graphics

Right click and save the images below for social media! 

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