Each family impacted by Krabbe disease responds differently as we’re all uniquely different. As you work to navigate the ups and downs of this life-threatening disease, perhaps you may be feeling empowered to jump into action. You may be asking yourself where can I make the greatest impact? How can I quickly get up-to-speed on the current scientific developments occurring in the Krabbe disease space? What’s needed to aid the advancement of nationwide Newborn Screening for this disease? What’s the best way to fundraise?
Eventually, families find themselves at a crossroads with the following question: Do I start a non-profit foundation or join the efforts of an existing foundation? As you contemplate this question, we’re happy to inform you that you can have the best of both worlds with a Family Advised Fund.
What Exactly is a Family Advised Fund?
- The opportunity for a family or an individual to establish a fund, utilizing KrabbeConnect’s non-profit platform and resources, to strengthen groundbreaking research, contribute towards a special project, or simply to aid other impactful efforts in the Krabbe disease space.
How Does It Work?
- You and your network of supporters can make a tax-deductible donation to a specific fund set up under your child’s name or another approved title. The name of the fund is approved by our Board of Directors to ensure it’s not already being utilized, and the name remains agreeable to others.
- Each year, you can promote your fund to family, friends, colleagues, as well as, hold fundraisers to build up your charitable account.
- Each year, KrabbeConnect will present projects that need help to advance the mission of the organization. Each family advising their individualized fund, will be offered the opportunity to select projects that speak to them. The project you select will acknowledge your fund as a contributor.
We encourage you to take a moment to review our brief slide deck and video to learn more!
Ready to get started? Email info@krabbeconnect.org to get started on establishing your family advised fund today!