Tag Archives: family

Photo of Rudy Soto with his family.

My name is Rudy Soto. I am from the great state of Texas and have lived there all of my life. I am married to a wonderful woman, Jennifer, who is my greatest supporter. We have four awesome children—two girls and two boys who range in age from 5 to 23. My motto is Can’t Grind Me Down, which I took on after I achieved remission in November of 2016.

In May 2015, Global Genes launched their 2nd annual Cox Prize for Rare Compassion contest which encourages 1st and 2nd year medical students to get to know a rare family and write an essay based on their experiences. If the medical student does not have a rare family to work with, Global Genes will match them with a rare family in their local area.

In just a few weeks, they have had requests from over 90 medical students for help in being matched with a rare family! These students represent dozens of medical schools all over the U.S. as well as Canada and the U.K.

Global Genes is asking our help in finding rare families we can match for this program. This is a wonderful way to create awareness for your disorder within the medical education community and possibly create a relationship that could shape the med student’s future career focus. The IPPF would love to have pemphigus and pemphigoid families represented in this fantastic program! What a great way to help spread awareness to the future of the medical community about pemphigus and pemphigoid! To let Global Genes know that you are interested in being a rare family for this program please email Carrie Ostrea carrieo@globalgenes.org

Please help us spread the word about their med student matching program by going to http://globalgenes.org/cox-prize-family to see what locations are currently asking for requests. This list gets updated weekly, so please check back often to see what new cities are requested.

Thank you so much for your support! If you have any questions, please do not hesitate to ask.

Carrie Ostrea
Advocacy Director / Parent Advocate
Global Genes – Allies in Rare Disease
http://www.globalgenes.org
(949) 248-RARE x110

Summer has always meant a lot to me. When I a kid I played Little League baseball on the southern shores of Lake Michigan. One year, our team was a solid 0-10 (no wins, 10 losses). It was July 1 and it was my birthday. I was officially 11 and we were about to officially be 0-11. We were terrible!

My good friend, Marty, was pitching that day, and things started looking up. As we entered the final inning, we were winning, but we were three outs away from victory. I will spare you the Hollywood details: We won in “Bad News Bears” fashion…a little trickery and a lot of luck. We still were the worst team in the league, but that day we were winners. I happily celebrated my 11th birthday triumphant with my friends and family.
Recently I spent a weekend with friends and family at the 16th Annual Patient Conference in San Francisco. I have to thank our hosts, Dr. Peter Marinkovich and Bay Area Support Group Leader Prem Jain for having us in their home town. Other Conference Committee members included Dr. Terry Wolinsky McDonald (co-Chair/IPPF BOD), Greg Wright (IPPF BOD), Dr. Razzaque Ahmed (2012 Annual Meeting host), Nancy Stoeckel (KabaFusion and pemphigoid caregiver), Sonia Tramel (former IPPF BOD member), and Marc Yale (Peer Health Coach). The planning started in July 2012 and ended the day before the meeting started. This year’s event was a success for many reasons, but these people made it all happen. Thank you.

If you didn’t get a chance to join us or if you did and just want a refresher, the audio has been transcribed for your reading pleasure! And PHC Jack Sherman is producing segments that will have the slides and audio combined – and be available as a DVD! You can find the 2013 Patient Conference materials online at www.pemphigus.org

This also is the first newsletter being done by someone other than me since #39 back in 2004. Thank you to Maeve Norton for her layout and graphic design skills. We look forward to this and future issues. Volunteerism is becoming more and more important in our operations as we remain lean, but still provide high-level programs and roll out new projects to benefit our community.
In celebrating our P/P family and friends, we extend our congratulations to Toby Speed who was married in May, and honor the memory of Bob Stillman who passed away in April. We are a small community – a family – and events like these affect all of us. We continue to share in the joys and sorrows of life together as one.
I hope you enjoy the Summer ahead with your family and friends. Remember, we’re here for you!