Megan Grieves

Joel and Leo are doing a virtual bike ride to raise money for their rare condition, ZC4H2 Associated Rare Disorders (ZARD).

Joel is 11 years old and loves school and his friends. He currently enjoys watching Frozen and The Little Mermaid. He loves relaxing in the hot tub. Joel has had many health issues and is currently struggling with an unknown GI issue which is causing him pain. This school year has been hard on him, but he is on a new treatment plan that is helping.

Joel's brother, 9-year-old Leo, is my forever baby, who loves cuddles and listening to me read his Trolls book on repeat. Leo wants me to spin him round and round in the hot tub while he laughs with glee. We are thankful that Leo has had a better year and pray it continues. ZARD has taken a toll on my children's health, and I count each day with them as a blessing from God.

My hope is that we continue to learn more about their condition and establish better clinical guidelines so their health can be better managed. The annual MDBR is our big opportunity to raise money to fund grants to understand the condition. From now until the end of June, the Orphan Disease Center will match your donation, so your generosity has twice the impact for Joel and Leo (up to $30k).

I would really appreciate a donation to help children living with ZARD. You can learn more about Joel and Leo at https://www.zc4h2foundation.org/about-zc4h2/living-with-zard/.

With hope,

Megan Grieves

The Penn Medicine Orphan Disease Center hosts this event to raise money for research in rare diseases. Please consider donating to our cause and being a part of transformative research. 100% of your donation, less platform fees, will go towards rare disease research.