To advocate and raise awareness for MPS1. To support research and fund treatments for MPS1 patients. To encourage MPS1 families to get involved and tell their stories.
In 2015, Ryan and Allie Ladd were seeking answers to why their 9-Month-old baby girl, Kennedy, had a large deformity on her back. They had asked the pediatrician and his reply:
3 months- “Nothing to worry about”
6 months- “Her muscles haven’t fully developed.”
9 months- no reply, but we were sent to East Tennessee Children’s Hospital for imaging. This led them to a genetic counselor at Cincinnati Children’s Hospital.
Two weeks after the genetic appointment they received a devastating news that Kennedy had MPS1 Hurler Syndrome.
Kennedy’s story grew on Facebook (Kennedy and Lincoln Ladd’s Prayer Group) and the Ladd Family wanted to return all the blessings they had received from their followers. They decided to fight for a future and increased quality of life.
To turn hope into action. We wish to use our journey through MPS1 as a vehicle of hope and light, all while we fight to find a CURE by 2025! So The Kennedy Ladd Foundation, Inc., a 501(c)3 non-profit organization, was created to FIGHT. Not just for Kennedy but for every child with MPS1. Because they envision a future where no parent ever has to watch their child suffer because of MPS1.
Before our daughter was diagnosed with MPS1, we had no idea that Hurler or MPS1 existed. We soon realized that rare diseases, like Hurler, often go underrepresented largely due to a lack of awareness. While going through treatment with Kennedy, we received unbelievable support from our family, friends, and local community. Their generous and compassionate response to our struggle made our nightmare a little more bearable.
We are grateful for all the support we have received, and we are grateful to have our kids home with us. We know that we have been blessed and made it a part of our mission to raise awareness to make a difference for others. To that end, we are actively speaking to share our story, educate people about MPS and Orphan Diseases, ways that they can help, and to raise funding for a cure.
We are open to speaking at churches, events, businesses, medical groups, or any other association. We are asking you to be our advocate. We would love to hear from you if you are connected with any such groups or have any recommendations, connections, or introductions that you believe would be able and willing to help contribute to our cause.
Ways we Advocate:
Participate in Everylife Foundation Events
Visit everylifefoundation.org
Rare Disease Week on Capitol Hill
Rare Across America
Talk to Schools
Telling Your Story
Ways we Encourage:
We provide iPads to MPS1 patients to help with the lengthy hospital stays, surgeries, and countless doctors’ visits.
Research we have supported: $13,000.00 to the MPS Society
We hope that sharing your journey and stories can provide hope and encouragement to families across the globe. If you are an MPS1 patient and you would like to share your story or journey please click the button below. If you have a child with MPS and would like to request an iPad please click the button below to apply.
