KRISTIN LASHOFF
Kristin Lashoff is a mom to three kids. Her family joined the rare disease community when her third child, Kayden, was born. Kayden was born with a spinal dermal sinus tract and tethered spinal cord. He had major spinal surgery at 14 months old at St. Louis Children’s Hospital. Just prior to that surgery and during the pre-surgery testing, the Lashoff family learned that Kayden also has Chiari Malformation Type 1. Her middle child, Lyla, was also recently diagnosed with Chiari Type 1 in January 2023.
During the first year of Kayden’s life, Kristin recognized the need for support and connection with others going through similar things. An event planner professionally, Kristin began planning events in support of Rare Disease and most recently kicked off an annual event, Skate Under the Stars, to bring the Rare Disease community together for a fun skate in celebration of National Rare Disease Day. Kristin is excited to help bring this community together and continue sharing their rare disease story.
Seanna Eisel is the mom to four boys. When her youngest son Bennett was 2 years old, he was diagnosed with Chiari Malformation Type 1 and Syringomyelia. The Eisel family began searching for resources as they navigated the Rare Disease world. Bennett underwent three major brain surgeries over the course of one year. After Bennett’s last surgery he developed meningitis, and the family learned that Bennett also has an Immune Deficiency.
Seanna continued to try to connect with other families that had been through something similar, that could answer questions and relate to the emotions that came along with having a child with a Rare Disease. Seanna was connected with Rare Disease families through friends and she began to recognize a common thread, the need to connect and support each other. Seanna became passionate about being a support for other families trying to navigate through the Rare Disease world and is very excited to see this community brought together!
SEANNA EISEL
MARIA GRANADOS
Maria Granados lives just west of St. Louis with her crazy crew including her husband Matt and her three goofy kiddos. Their family’s journey into the rare disease world began about 4 years ago, when their oldest Natalie (now 6) was diagnosed with a rare form of muscular dystrophy - PYROXD1 - making her one of roughly 20 or so cases discovered worldwide to date. When they stumbled upon a research team in Australia studying this gene that’s affected, they knew that they had to do something to TAKE PART in the research…and so Take Part Foundation was born! Today, Take Part Foundation is dedicated to funding rare pediatric research projects and access to genetic testing to help kiddos like their own fight for the possibility of a thriving future.
Maria is passionate about her faith and often shares messages to encourage moms in their fight! You can check out her podcast, Let Your Fight Shine, on all podcast platforms. Maria also loves sharing her real life journey as a rare disease mama, Jesus follower and business owner via social media to encourage others to embrace the love God has for them on their journey. She’s so grateful for this space and the encouragement of this community right here in St. Louis.
ABBY PUCKETT
Abby Puckett is wife to a fantastic husband who is an OB/Gyn physician; and mom to 3 amazing kiddos ranging in age from 24 to 17. The Puckett’s have raised their family just west of St Louis and have developed some really strong friendships over the years with people who have become “family”. It truly takes a village!
Abby’s background was practicing as a CPA for the first five or so years out of college in public accounting ; however, that has transitioned over the years into being a stay at home mom and working part time doing contract work to now running her own e-commerce business of clean- crafted coffee and wine! Abby loves community and connecting people and helping others understand their purpose.
The Puckett’s daughter, Aly, was diagnosed with hydrocephalus and Dandy Walker Syndrome variant at the age of 1. This immediately catapulted their family into uncharted territory. With the guidance of their faith, family and friends they started this journey that is still unfolding. 10+ brain surgeries later Aly and family are stronger and better as they see God’s story unfold.
Quickly it was realized what you need most when diagnosed with an illness, condition, etc is a community of others who can understand, empathize and relate. Abby launched the 1st Hydrocephalus Walk in the St Louis area back in 2007. It’s amazing when you have a vision and a passion anything is possible. The walk is still happening annually and continues to raise money to go towards finding a cure for hydrocephalus.
Abby is so excited about “United for Rare” and can’t wait to be a listening ear or a voice of compassion to others.
God bless you each.
Suzanne Recer is a mom of a 5 year old, rare little boy with HNRNPU Related Disorder. Her and her husband reside in the St. Louis area with Benton, their kitty Whitney, and many family members close by. Benton's genetic disorder is so rare that there are only about 80 cases in the world. This extremely rare condition causes epilepsy, autism, developmental delays, renal dysfunction, heart defect - which has been surgically repaired, and some links to cancer. Benton sees a variety of therapists each week - Applied Behavior Analysis, Physical Therapy, Occupational Therapy, and Speech and Language Pathology.
Although there is a Facebook group with HNRNPU parents, it can still feel very isolating to be a parent of a child that is so rare. In their case, there is almost no research on HNRNPU so they had to do all of the legwork alone and connect to specialists to manage the care of Benton with no help. Suzanne is so excited to help others feeling isolated and don't know where to start. We are United for Rare!