Help and Hope for the Glut1 Deficiency Community


How do I ask individuals for donations?

Just ask. Most people are generous and are willing to give to charitable organizations. Research finds that donors are motivated because it makes them feel good and they like to be recognized.  The most difficult hurdle for most fundraisers is the “asking”; but what our experience tells us is that once people get over that hurdle, they find a great satisfaction and love for their fellow man when they see the generosity that most often follows. So ask, and say “Thank You”.  Some will say no, but that’s okay – and a great many will surprise you with their gifts.


Is the Foundation a non-profit?

Yes. The Glut1 Deficiency Foundation is a non-profit organization recognized by the IRS. All donations are used toward the Foundation’s mission of increased awareness, improved education, advocacy for patients and families, and support and funding for researchers.


Are donations tax deductible?

Yes. The Glut1 Deficiency Foundation is incorporated in the State of Indiana and is recognized by the IRS as a charitable organization under tax code 501 c 3. Tax ID number is: 45-2190535


How does the Foundation use the donations it receives? 

The Glut1 Deficiency Foundation is run by an eight-member board of parent volunteers. The board makes decisions based on the mission of the Foundation which is to educate, advocate, and support researchers as they work for a cure. Activities towards the mission include supporting the Glut1 Deficiency Conference, exhibiting at medical conferences, and funding research projects.  The mission is funded entirely by donations.  Foundation financial statements can be found on our website. All funds are used to better the lives of those affected with Glut1 Deficiency and their families.


How do I inform potential donors about Glut1 Deficiency and/or the Foundation?

There are many ways to inform potential donors about the Glut1 Deficiency Foundation.

  • Direct potential donors to the web-site: The website is full of useful information about Glut1 Deficiency, the mission statement of the Foundation, as well as recent and ongoing projects that the Foundation is involved with.


  • Direct potential donors to the Foundation’s Facebook page which contains all the latest news from the Foundation and the G1D community.


  • Provide donors with a Foundation brochure which contains information about Glut1 Deficiency and the G1D Foundation. Foundation brochures are available on the web-site in pdf format in English, Spanish and Portuguese. Hard copies of the English version of the brochure are available upon request. Please contact


What is the Foundation’s website?

The official Glut1 Deficiency Foundation website is:


What are the ways that donations can be sent to the foundation?

Donations are accepted online or by US Postal Mail:

  • US Postal Mail – Checks can be sent to the Foundation at: The Glut1 Deficiency Foundation, PO Box 737, Owingsville, KY  40360 USA.



  • The Foundation also conducts an annual fundraiser in February where individual families create personal web pages.  Credit card donations are also accepted through these personal fundraising pages in February and throughout the year.


What type of fundraiser should I have?

This is a personal decision. Ask yourself – what do you like to do or what you are involved in (running, baking, bowling, etc.). What is your time availability? Will you have a lot of help with your event? How soon do you want to have the fundraiser?  Does your employer allow fundraisers?

As mentioned, time and effort will vary with the type of fundraiser you choose.  Here are a few examples for you to consider:

  • Sponsorships/Donations – Ask friends, family and local businesses to make donations in your or your loved one’s honor or to “sponsor” your participation in a third-party-event, e.g., a road race, walk, hike, etc.  (Note: this type of fundraising is likely to require the least amount of effort for the fundraising [all you have to do is ask], but could require some personal commitment for an event (e.g. training for a run).


  • [____________] -A-Thons – Use your imagination to fill in the blank and ask people to pledge money for completion of the activity (e.g., minutes jump-roping, miles walked, balls thrown into a hoop).


  • Raffles – Ask for donations from friends (e.g., for baked goods) or local merchants, or create baskets with and raffle them off.  Or do a 50/50 where the raffle funds itself!


  • Sales – Baked goods, crafts, yard sales (make it community-wide!).  Again, you can ask friends and local merchants for donations.


  • Service or activity oriented – This category includes car washes, yard services, sports tournaments (e.g., bowling/basketball, etc. where people create teams and pay to play or ask for pledges based on performance), carnivals or community picnics (with an admission “donation”). 
    Time commitment can vary greatly.  A car wash can be done with little advance prep other than signs around town and a group willing to work while something more extensive (like a community picnic) would require more work.


  • Party or Product Orders – Hosting a party or taking up an order.  Many independent consultants for Tupperware, Thirty One, Pampered Chef, etc. will donate their sales percentage (usually 20-25%) to a charity.


  • Event Food Sales – Provide food sales for local auctions, sporting and community events (many events ask different groups to take turns staffing and in turn they provide all or a portion of sale proceeds to the group).


  • Warrior Dash:  Provide a team of volunteers in exchange for a $1,000 donation to the Foundation (


There is a great list of fundraising ideas from our partners at the National Organization for Rare Disorders (NORD).

We have a list of successful fundraisers that G1D families have had in the past along with contact information. Please contact for a copy of that list.


Do you have a sample letter for fundraiser?

Because there are so many different types of fundraiser, the following is a general format to follow:

  • First paragraph: Introduce yourself, your child, and your purpose for writing (details of your fundraising event)


  • Middle paragraph(s): Provide more details about Glut1 Deficiency and the Foundation.  Include the foundation’s mission statement ( and how important donor/participant support is (this can be divided into two paragraphs if need be).


  • Last paragraph: Explain exactly what it is you want your letter recipient to do and how they can do it.



Do you have templates for fundraisers?

  • The annual fundraiser “Love Some1 with Glut1” takes place in February. Individual families set up their own web-page based on a Foundation-provided template for fundraising. While the official fundraiser ends on February 28, this personal web-page is able to remain available for fundraising throughout the year, if requested.


  • We also have the capability through our fundraising software to set up online pages for birthdays, anniversaries, memorials, marathon participation, and many other special events where donations to the Glut1 Deficiency Foundation could be requested.


Does the Foundation have event materials that I can use for my fundraiser?

The Glut1 Deficiency Foundation has invested in the creation of professional logos and banners to enhance the professional and consistent image of the Foundation and to spread the awareness consistently of Glut1 Deficiency. Official Glut1 Deficiency Foundation logos are available upon request for use in your fundraiser. Please contact to request a Foundation logo.

The Glut1 Deficiency Foundation also has a limited number of logo pens, Love Some1 buttons, genes ribbon decals, brochures and banners that may be available for your event.  Please note: all marketing materials come out of the donations budget so they need to be well utilized.


How do I promote my fundraiser?

Begin with letters and e-mails to your personal contacts, as well as postings on social media such as Facebook and Twitter.  Most local newspapers have a free community happenings section where you can advertise your event. Some families have had features stories written about their child and why they are fundraising. Send an e-mail to the newspaper and tug at heartstrings! Also, most local television and radio stations have event calendars that will include your fundraiser (check their websites). Many stores have an area in their lobby to post flyers. Ask your child’s school/doctor’s offices, etc. to post a flyer. Depending on the type of event you having, you may consider putting up posters at “high” traffic areas.


How do I create a fundraising page on the web?

Making a webpage for your fundraiser is a great way to get the word out about your event and to facilitate giving.  Webpage makes it easy to communicate to large groups of people and provides for easy payment methods.  Best of all, there are readily available resources that make personalizing a webpage and fundraising online very easy, some of these include:  Crowdrise, Razoo, and Gofundme.

Most of these organizations provide easy to follow instructions to set up and personalize your page with pictures and/or videos, as well as text to describe your event.   They also provide tools for sharing your page by e-mail and social media such as Facebook, Twitter and LinkedIn, and they make it easy and convenient to send the all-important thank you notes as well!  Payment is streamlined via credit card (and sometimes PayPal).

When you state that your event is “for the benefit of the Glut1 Deficiency Foundation,” on the webpage then the site accumulates the donations and remits payment directly to the Glut1 Deficiency Foundation and your donors receive the tax deduction.  It is common for fundraising sites to charge a small processing fee or allow the donor to “gross up” their donation to cover the transaction cost.


Can you provide more information about the Love Some1 with Glut1 Campaign?

The Love Some1 with Glut1 campaign is the annual fundraising campaign for the Glut1 Deficiency Foundation. The campaign is run in conjunction with the world recognized “Rare Disease Day” which is the last day of February. The Love Some1 campaign runs from February 14, Valentine’s Day (a perfect day for love) through Rare Disease Day, February 28. The Foundation prepares a web-page template that it shares with the Glut1 community. Individual families then can customize their web-page by adding a photo or video, and personal story about their family or fundraiser. This web page link can then be sent to friends, families, co-workers, church family, sports teammates, etc. to encourage donations. The template will capture all of your personal fundraising results, allow you to send personal thank you notes and monitor your progress.  Watch for information in early January for each year’s Love Some1 with Glut1 campaign.

How do I thank donors?

One of the most important things you can do is send a thank you (and the more personalized the better). Donors are much more likely to become repeat donors if you show your appreciation and reassure them that giving to the G1D Foundation was a good decision.

Consider the following when you write your thank you note for someone who has supported your fundraising efforts:

  1. Explain why the donation was so important to you and your family.
  2. Tell your donor what a difference their donation is going to make.
  3. Educate your donor on where the funds go.

All online and U.S. Mail donations will receive both a tax receipt and a “Thank You” letter from the G1D Foundation.


I’m not able to have a fundraiser, but I would still like to help. Any suggestions?

  • Join the annual Love Some1 with Glut1 Campaign! It is easy and the template is prepared for you. All you have to do is ask friends, family, etc. If you missed the annual February campaign this year, make an effort to join next year. Together we can do so much more than any of us can do alone.


  • Make your browser of choice and use when you shop online, selecting to support the Glut1 Deficiency Foundation.  Every time you perform a web-search, $0.01 goes to the G1D Foundation.  Every time you shop through Goodshop, online retailers will donate a portion (ranging from 2% – 10%) of your purchase to the G1D Foundation.  The Glut1 Deficiency Foundation has received over $5,100 through these programs.


  • Volunteer!  The Glut1 Deficiency Foundation welcomes your time, your ideas and your unique talents.  Contact any board member to learn more.


  • And finally…Use your VOICE to help spread the word about Glut1 Deficiency and the G1D Foundation.  All of us can help bring about more awareness and education of Glut1 in our everyday lives and through social media.