Board Members

micheleMichele Milota, Sacramento, CA—Executive Director – After graduating with a Bachelor of Arts degree in information and communication studies from Chico State University in 1989, Michele worked in the sales, television and education field. She brings passion, creativity, boundless energy, and many contacts to her work for the XP. Michele is the mother of four children, one has XP.


toddTodd Feltner, Washington, UT—Chairman of the Board and Treasurer – Todd is a certified public accountant with expertise in business services and taxation with an emphasis of non-profit sector. He has worked in the industry for 9 years. Todd received his bachelor’s and master’s degree in accounting from Southern Utah University. He is the father of five children and two of his children have XP.


jenJennifer Feltner, Washington, UT – Jennifer owns her own dance studio and has over 150 students enrolled. She also has a degree in cosmetology. She is an active leader in her community and church and she is a mother of five children, two of whom have XP.





Kittie Tenney—Kittie Tenney is the mother of 8 children. Their daughter Lizzie, now 22, was diagnosed with XPD at age 12. Her granddaughter Anna, 7, also has XP. She and her husband, Steve, live in Highland, Utah. Kittie loves the theater and has been involved with her local arts councils as producer and actor. She is active in her church and loves to spend lots of time with her family and 20 grandchildren.


Sarah Madden, El Dorado, KS – Treasurer—Sarah is the Office Manager and Accountant for Butler Rural Electric Cooperative. She received her bachelor’s of science degree in Accounting from Emporia State University. She is the treasurer for the First Christian Church in El Dorado. She is the mother of two children, one of whom has XP.



rossiRossi Byrne, Austin, TX—Rossi has an associate in Business Administration, and is finishing her Accounting degree. She is involved in her community by volunteering in her kids school, church, and other nonprofit organizations. She is a mother of three, one of whom has XP.


kathyCathy Hancock- Roseland Louisanna- Cathy Hancock is retired interior designer. She has dedicated her life as talented seamstress to helping protect countless XP patients worldwide for over 20 years. Cathy was a dedicated grandmother to our beloved Cole who passed in 2014.



Kyle Madden-El Dorado Kansas– Kyle Madden teaches high school math and social studies at Bluesten High School and mathematics at Butler Community College. He received his Bachelors of Education an Emporia State University and his Masters in Sports Administration from Wichita State University. He is the father of an XP child.



Alan Jakovac, Milton, ON—Alan has worked in communications for more than 20 years working for international and boutique public relations agencies and as a consultant. He earned his Bachelor of Arts Degree from McMaster University in Hamilton, Ontario and a Post-Graduate Certificate in Public Relations from Humber College in Toronto, Ontario. Alan is the father of two children, one of whom has XP.



Miranda Murphy – Albuquerque, New Mexico. Miranda is a beauty and special effects makeup artist who works on tv and movie productions in and around New Mexico. She has two children, Lucas and Lila. Her daughter Lila has XPD.