Why We Walk

Sharing our personal story is one that feels complex and humbling, but important in an effort to raise awareness, funds for research and medical care, and hope for future generations of people who face similar challenges...

As many of you know, Kidney Disease is something that has impacted our family in many ways. 

Kidney Disease--specifically ADPKD--which is passed down through genetic mutations, is something that has significantly impacted Allan's side of the family.  Many members of his family have been directly and indirectly affected by this disease. 

In 2016, Allan's mom, Severina, passed away suddenly from complications related to ADPKD.  Following that, in 2017, Allan became very ill with ADPKD.  In that same year, we were blessed to learn that he and Melanie were a match!  They underwent successful transplant and donor surgeries on November 28, 2017.  The years following that have been filled with triumphs and setbacks, but we have always sought comfort in Allan's medical team and our families and friends.

Several years ago, and completely unrelated, we found out that Melanie's nephew, Fischer, also has an extremely rare Kidney Disease, called Idiopathic Immune Complex Glomerulonephritis (Full House).  Only 20 people worldwide have been diagnosed with this disease over the past 40 years.  Fischer's case is even more unusual because it's just one of about a dozen that's idiopathic--meaning there's no underlying primary reason that's causing it--it's seemingly out of nowhere.  In the years since his diagnosis, Fischer has bravely faced many unknowns and challenges and continues to fight for his health.

 
This year, our son Sebastian--who we now know holds the same genetic mutations for ADPKD--has asked us to walk and raise awareness.  He has challenged us to stand publicly for what he believes is an important cause and we are proud to walk beside him on "Team Sebastian". 

We walk for Sebastian, for our family, for Fischer--who so bravely face many unknowns--and for all people who live with the impact of Kidney Disease. 

This year, our team has joined others throughout the country to fight against kidney disease. On November 10, 2024 we’ll walk for our loved ones, colleagues or friends who cope with this devastating chronic illness each day – and for those who lost their fight too soon.

Together, we walk to support the lifechanging work of the National Kidney Foundation:
     - To ensure that families will have a place to turn when they need answers.
     - To keep up the fight for policy changes to protect kidney patients and living donors.
     - To drive innovation in transplantation and get more loved ones off the kidney transplant waitlist.

Will you join us?