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

Day of Hope Guide

Engage Your Community to Support Rare Families

Each year, families, rare allies, and companies participate in NTSAD’s Day of Hope to raise awareness and critical funds toward research to support individuals and families affected by Tay-Sachs, Canavan, GM1, and Sandhoff diseases.

You, too can participate, hold an activity or host an event! We have created this guide to help you engage your family, friends, colleagues, vendors, and networks in a Day of Hope.

This year marks the 11th Anniversary of Day of Hope, and with 14 active drug development and clinical trials, we are truly in a Season of Hope! To date, nearly $530,000 has been raised since our First Annual Day of Hope.

Now more than ever, we are searching for connection and community. Day of Hope 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 18, 2021, 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.

We can help you promote and raise money for your event online by creating a link and page to share that make it easy for your friends, family, and colleagues to register for the event and make donations directly to NTSAD using a credit card. We can track your donations for you, too!

Easy 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:

  • 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
  • Creating your own giving page to share with family and friends

 

The NTSAD Team

Becky Benson, Family Services and Conference Coordinator. 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 Associate. 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 online fundraising campaign 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!    

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!                       

Create and Share a Personal Giving Link

A personal giving link can be created for you to use for your Day of Hope fundraising. The link’s url (or name) can be personalized i.e. DayofHopeforAlex, and can include a picture of your choice, information about you or your affected loved one, and/or details about an in-person or virtual event, too.

The link can be shared with friends and family on social media, through email, or text!

To request a personal donation link, email Sydnie Dimond, at This email address is being protected from spambots. You need JavaScript enabled to view it.. Sydnie also can create online giving tools on the NTSAD website if you are holding an event.

If you prefer not to have a personalized giving link, direct supporters to the Day of Hope link here  http://bit.ly/2NWpZbW

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 Like Mine.

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 personal giving link or direct your supporter to the Day of Hope link here  http://bit.ly/2NWpZbW]

Thanks to generous donors NTSAD’s Day of Hope has raised more than $500,000 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 11th 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.

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.

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.

Sample Content:

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 $500,000 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 11th 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? http://bit.ly/2NWpZbW or add personal giving 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! http://bit.ly/2NWpZbW or add personal giving link
    • Currently, there are more than 14 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! http://bit.ly/2NWpZbW or add personal giving link
  • Download NTSAD’s Day of Hope Facebook stories and posts! These can be found below, or saved from the NTSAD Facebook page.
  • On September 18th, share NTSAD’s post about Day of Hope.

Use Instagram Story Options to Raise Awareness and Money

Add a link to your profile’s bio—this link could be your personal giving link, your t-shirt campaign, or to ntsad.org!

  1. Copy the url for the link you would like to add such as http://bit.ly/2NWpZbW.
  2. Go to your profile.
  3. Click “Edit Profile.”
  4. Copy and paste the link next to website.
  5. Encourage others to donate through a post to your feed or a story! Let them know the link to give is in your bio.

Create stories to spread awareness and direct followers to the link in your bio.

Download NTSAD’s Day of Hope Instagram stories and graphics for even more posts that raise awareness and encourage giving! These can be found below or saved from the NTSAD Facebook page. Be sure to have the corresponding link http://bit.ly/2NWpZbW in your bio so your followers can learn more!

Spread Awareness and Add a Facebook Profile Picture Frame

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

To add the frame:

  • Go to your personal Facebook page.
  • Click on your profile picture, then click update “Update Profile Picture.”
  • Click add frame and search “Day of Hope 2021” and select the frame.
  • Click use profile picture.

Need Help? Call or email Sydnie Dimond, Development and Communications Associate at 617-277-4463 or This email address is being protected from spambots. You need JavaScript enabled to view it..

Day of Hope Graphics

Right click and save the images below for social media!

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