Local 2 partners with Ramirez family, Be The Match, members and community for bone marrow match drive.
“Jax” Jackson Ramirez is a 6-year-old, Pittsburgh native who was diagnosed with a rare autoimmune disorder called IPEX in October 2021. Since then, his parents have been searching for an exact bone marrow match to save him from this life-threatening disease.
On Thursday, April 21 from 5-7 p.m., join our fellow members, family and friends at the Insulators Local 2 Union Hall, 109 Pleasant Dr., Aliquippa, PA 15001 for a swabbing drive to uncover Jax’s match. Known for living happily, acting precocious, inquisitive and more, Jax is one in a million and needs to find his perfect stem cell donor with Be The Match, an international registry dedicated to helping others find stem cell matches. Over the past 30 years Be The Match®, operated by the National Marrow Donor Program (NMDP), has managed the most diverse marrow registry in the world for the thousands of people diagnosed every year with life-threatening blood cancers like leukemia and lymphoma, and in Jax’s case, IPEX.
IPEX is a genetic disease of immune dysregulation, in which patients can present early in life. It is extremely rare, affecting 1 in every 1.6 million people.
Missy Kuban, Jax’s mother, is on a mission to find a match for her son and continues the search after meeting around 30 Local 2 members at P-Dub’s Sports Bar & Grille, which also hosted a drive for Jax. Since talking some members, Local 2 is taking the reins on the next stop to help Jax and to also help others on the registry in need of the curative process of stem cell donation.
Stem cell donation is nonsurgical for the donor. At each drive, a registrant will swab with a Q-tip to see if their DNA is a match with Jax or anyone on the registry. To donate stem cell, one has to be a perfect match. If a person is a match, they donate some blood for the stem cell curative process. 1 in about 250 people are called to donate and about only 80% have peripheral blood drawn. It all benefits the recipient in an easy process that does not include the hassle of health insurance companies, thanks to Be The Match.
Kuban is on a mission to save her son’s life and also advocate and raise awareness on a national level for medical equity. In the registry, 80% of people find a match if they are Caucasian, 48% find a match if Hispanic and Latino and 29% find a match if they are African American or Black. She advocates for her son so there is more representation from people of color to support the cause.
Anyone who is 18-40 years old can register to see if they are a match for him. Luckily, the family’s on-going drive efforts have found a match for another person, but Jax is still looking for his perfect match. Join Local 2 on April 21, 2022, text “Jax” to 61474 or visit join.bethematch.org/jax to sign up today. And don’t forget to share with your family and friends, too. Be the match for Jax!
Be sure to follow @bethematchforjax on Facebook, Instagram or TikTok for all updates!