Despite having only met Jan in person in May at the ASI conference, she was such an inspiration and our emails and phone conversations left me feeling like so many other families...devastated over this loss! Because of who she was and her outreach she became very near and dear to my heart as she guided me down the road of having a little one with Alstrom. Always there to offer words of comfort or some of her insight to reassure me with each bump I hit in the road on this life long journey that is Alstrom. Her dedication to Alstrom inspired me so much so, that I now plan to go back to school to become a clinical lab scientist and my goal since attending the conference was to try to relocate closer to Jan and The Jackson Lab because I felt this was my little ones best hope at the best life possible. Hearing of her passing may have dashed my dream of eventually relocating and hoping to gain enough experience and education to try to get into the research at the lab with her and the team but it did not change the miracle she preformed for me and the love that miracle created, you see, as a lost parent, overcome by grief in accepting an Alstrom diagnosis, she insisted I made it to the conference, saying we needed to move heaven and earth to ensure I could attend and I did.. The gift she gave me was one of acceptance and love beyond comprehension and without barriers. You could literally feel the love as soon as you walked into Hotel 1620 and the unity she and Robin helped create made leaving the conference the most bittersweet moment of my life because being surrounded by people of all walks of life, faith, culture and so on who all shared one thing in common created this beautiful and overwhelming sense of belonging and leaving is one of the hardest things I have had to do in my life. I've heard SO many families say how they wish we could all be together all the time and that is because of the love and understanding that started with Jan and Robin and trickled down into every life they have touched. How bittersweet it is knowing our Alstrom guardian angel that was here with us, is now our real angel no longer bound to her body. My heart goes out to Robin and her family because as heartbreaking as it is for the Alstrom family to lose such an amazing woman, I couldn't imagine the pain losing her would be if I knew her most of if not all of my life like Robin and her children and grandchildren and on behalf of the Alstrom family I would like to thank all of her family for sharing such an amazing woman with the Alstrom community, I know her endless journey to cure Alstrom must have consumed so much of her time and you have my deepest gratitude for that. Much love from Michigan❤️