Why GiveNF
Every organization has a story. This is ours.
Meet Our "Why"
My daughter, Caroline was diagnosed with NF in early 2023 at 9 months old. At the time her only indicators were birthmarks, called cafe-au-laits, which are associated with NF. My husband and I were told we can either wait and see or continue with genetic testing. Since I don't "wait and see" well, we opted for the testing.
After a slew of blood draws and cheek swabs, it was discovered that Caroline does in fact have NF. Specifically she has a microdeletion in which 14 genes are deleted from one copy of chromosome 17. It is believed this may be indicative of a more serious NF presentation, although further research is needed. Caroline's disorder is a spontaneous mutation, not hereditary.
Caroline - Our inspiration
NF is highly variable and carries an even broader range of outcomes than most other genetic disorders. This leads to a reality of praying for the best while preparing for the worst. While processing Caroline's diagnosis, I sought out others whose lives have been touched by NF. Their stories range from having just a few small bumps on their skin to facing major, life-altering tumors. Many have lost loved ones.
At 3 years old, through God's grace, Caroline falls in the latter category with only a small bump or two. I pray this is how her story continues. However there is no way to predict how NF will manifest over Caroline's lifetime. As I previously stated, I don't wait and see well. It is because of my desire to do something that I started GiveNF.
Our Mission
My goal with this organization is to host fun events that the West Michigan community wants to attend, raise awareness, and donate all proceeds after event costs directly to NF research.
Caroline is my why.
And through GiveNF, I hope she, and everyone affected by NF, will one day have more than hope.
- Danielle Grover, Founder & President
Understanding NF
Key facts about Neurofibromatosis
People affected by NF worldwide
NF1, NF2, and Schwannomatosis
Of cases are spontaneous mutations