I’m excited to be participating in Alport Syndrome Foundation's 2025 Annual Campaign! I’m passionate about this cause and would appreciate you support.  Every donation—big or small—helps me reach my fundraising goal and directly impacts this important cause.

Here's how you can help:

• Donate: Contribute whatever you can. No amount is too small.
• Spread the Word: Share my fundraising page with your friends, family, and social networks. Let’s spread awareness so we can raise more.

Thank you for standing by me in this effort. Your support means the world to me and my family. 

More about our family's story: 

In December 2020 I went to my OB for a standard 24 week appointment. At the visit my blood pressure was slightly elevated, so my OB had me do extra labs including a urinalysis. Later that night she called me and told me to go to the hospital in Denver to meet the maternal fetal medicine team - my protein levels were incredibly high. I spent 2 days in the hospital completely various labs and tests and was diagnosed with pre-eclampsia given the protein and a couple elevated blood pressure readings. Fast forward to 3 months post partum when my protein levels had significantly decreased compared to while I was pregnant, but still remained far outside the normal range. After meeting with a nephrologist and explaining that my mom had been diagnosed with Glomerular Nephritis as a teen, I underwent a kidney biopsy. The biopsy sample baffled the pathology team, and it was viewed by several physicians to come to a conclusion - it was consistent wih Alport Syndrome. 

Remi and I both underwent genetic testing to confirm the diagnosis, and we both came back positive for a mutation on the COL4A5 gene. This gene is the X-linked form of Alport syndrome. Due to the nature of the gene, females tend to have a wide raneg of symptoms; from no symptoms at all, to needing a transplant at 20, and anywhere in between. Males only have 1 X chromosome, so it is fully expressed. This means that symptoms are far more aggressive and often start at an earlier age, with most men needing a transplant between ages 16 and 30. Given Remi had such an early diagnosis and was able to begin medication when he turned 1, his nephrology team is hopeful we can get him to 30 with his native kidneys. 

Understanding all of this is why it is critical to donate to the Alport Syndrome Foundation. ASF is the sole sponsor for any research regarding Alport patients. Donations made to the foundation directly contribute to critical research to advance the treatment of Alport syndrome. Currently it is only managed by an ACE/ARB drug (hypertensive medication) because it happens to have a side effect of coating the kidneys with a protective layer. ASF dreams to find a better treatment that is targeted specifically for Alport patients. With donations and advancing science, maybe we will be able to avoid a transplant for Remi or have easy and painless dialysis options, the possibilities are endless! So, please consider donating to this fantastic and life changing foundation. 

Thank you.