Shira Arnold Concord, North Carolina
Mother to Cayden
Shira has been involved with Families for HoPE since its inception in 2006. She acted as secretary, fundraising chair and graphic designer since the beginning, and began serving as its President in fall of 2010. Shira's son Cayden had MIH-V HPE, bilateral deafness, Cortical Visual Impairment, feeding and breathing challenges, and more due to a unique CH 13 translocation. Sadly, he passed away in his sleep at 4.5 years old in 2008 after a life filled with miracles and blessings. Shira and her husband Joey are also blessed to be the parents of Skylar and Devin. They live near Charlotte, North Carolina.
You may contact Shira at shira@FamiliesforHoPE.org.
|
Arika Gates Tipton, Indiana
Mother to Madelyn
Arika is currently serving as Assistant Treasurer of Families for HoPE, Inc. and has been a member of the board since 2009. She was born and raised in Tipton, Indiana where she and her husband Scott still reside. Arika is the mother of two amazing kids. James and Madelyn ("Maddie") are twins and were born on 9.14.06. Madelyn was diagnosed with HPE in utero at 12 weeks gestation. Maddie was received unto the Lord on June 24, 2008. Arika has a Bachelors Degree in Ag Business Management from Purdue University and is currently employed at Pioneer Hybrid International in Tipton, Indiana. In addition to her work with Families for HoPE, Arika is involved with her church Rock Prairie Baptist Church. Arika and her family love to go camping and are actively involved with the local tractor and engine clubs.
You may contact Arika at Arika_Gates@FamiliesforHoPE.org.
|
Leslie Harley Indianapolis, Indiana
Mother to Samuel
Leslie Harley is the Treasurer and a founding President of Families for HoPE, Inc. She is a native of Sharpsville, Indiana and is a resident of Indianapolis, Indiana. Leslie is the mother of Samuel ("Sammy"), who passed away January 7, 2008 at the age of 4. Sammy was diagnosed with HPE in utero at 24 weeks gestation. Leslie has a tender heart for children and families dealing with epilepsy, tracheostomies, and/or a fragile medical status. Leslie is married to Steve Harley, and Sammy is their only child. She is a co-author of "Parental Perspectives on Living With a Child With HoPE" published in the American Journal of Medical Genetics Part C, February 2010. In addition to her work with Families for HoPE, Leslie is actively involved in Indianapolis with Josh Timmerman Racing, OnTrack Ministries, and Traders Point Christian Church.
You may contact Leslie at Leslie@FamiliesforHoPE.org.
|
Molly Johnson Toutle, Washington
Mother to Marissa
Molly joined the board of Families for HoPE in 2010. Molly is a stay-at-home mom, who sometimes wishes it really meant time at home. Molly enjoys taking lots of pictures of Marissa and scrapbooking. She has involved Marissa in many activities that include: PT, OT, Speech, feeding class, swimming, music, art, and dance. Marissa was born with some health problems including Choanal atresia, and Developmental Delay, and chronic Acid Reflux; however was not diagnosed with Semi Lobar HPE until 9 months old. At 1 year old, The Carter Center re diagnosed her Septopreoptic Lobar HPE.
You may contact Molly at Molly_Johnson@FamiliesforHoPE.org.
|
Ramona Joyce Moulton, Alabama
Mother to Leah Faith
Ramona became a director of Families for HoPE in 2010 and currently serves as the Assistant Secretary. She is the mother of two girls, Sadie Grace and Leah Faith.
You may contact Ramona at Ramona_Joyce@FamiliesforHoPE.org.
|
Joey Leung Draper, Utah
Mother to Jaxson
Joey joined the board of Families for HoPE in 2010. A native of Salt Lake City, Utah, Joey graduated from Utah Career College in 1996 and worked as a Dental Assistant prior to having children. Joey and her husband Chris have 3 children--Jordan, Jayden, and Jaxson. With a prenatal diagnosis at 28 weeks gestation, Joey and Chris learned that Jaxson would be born with with semi-lobar HPE. Jaxson Riley Leung was born on March 12,2007. In addition to raising three boys, Joey is an active volunteer with her son's school and sports activities. In her free-time, Joey enjoys educating herself and others about HPE.
You may contact Joey at Joey_Leung@FamiliesforHoPE.org.
|
Gabriela Diaz Pena Provo, Utah
Mother to Eva Isabel
Gabriela joined the board in 2010. Gabriela is a stay at home mom to Eva 2 years old, who has Alobar Holoprosencephaly,
Evandro, 1 year old and wife to Jose. Gabriela
has served as a counselor in the presidency of her church’s local women’s
organization. She enjoys serving her
local community particularly the Latino community. Previous to staying home with her children
Gabriela worked in the areas of law, medicine and banking serving as an
interpreter/translator, as well as doing business development and outreach, in
each area. She has volunteered for
several years with the National Hispanic Women’s Organization’s National
Conference. She has also worked as the
Latino Community Liaison for a law firm in Phoenix, Arizona working alongside
the Hispanic Chamber of Commerce and local business owners. While only being married 4 months, Jose and
Gabriela discovered that they were 8 weeks pregnant. At the 20-week ultrasound they discovered
that Eva had Holoprosencephaly. Having
so many trials so early in their marriage has helped build a foundation of
strength and has put perspective back into their lives; life is short and very
unpredictable having purpose makes it more fulfilling. Eva has helped them better understand love,
family, togetherness and charity.
You may contact Gabriela at Gabriela_Pena@FamiliesforHoPE.org.
|
Roxanne Steele Richmond, Indiana
Mother to Rachel
Roxanne is the Secretary for Families for HoPE, Inc and is one of the founding members of the organization. Roxanne and her husband, Brian, were born in Indianapolis and currently live in Richmond, Indiana. Roxanne has a Masters Degree in Education and had taught children with moderate to severe disabilities for 9 years before the birth of her twins, Nathan and Rachel, in 2002. In addition to Nathan and Rachel, she is also the mother of Mariah and Sara. Roxanne is passionate about children's services and volunteers her time not only to Families for HoPE, but also to Girl Scouts, her church education committee, PTO, and her children's classrooms. Roxanne has a deep understanding of the concerns and needs of families raising more than one child, twins, and raising a child who is medically fragile.
You may contact Roxanne at roxanne@FamiliesforHoPE.org.
|
Ed Tierney Yarmouth, Massachusetts
Father to Maeve
Ed joined the board of Families for HoPE in 2010 and serves as its Vice President. He has lived in on Cape Cod for most of his life and is married to Meggan, who is from Harwich, a native Cape Coder. Growing up on the Cape surrounded by the ocean and nature has launched his interests in the outdoors. Ed is an avid fresh water Bass fisherman who is active with local tournaments. Ed graduated from the Massachusetts Harbormaster Academy in 2004 and is a Natural Resource Officer for the Town of Yarmouth, in charge of Marine operations. In this job, Ed is responsible for all marine law enforcement and search and rescues on the waters throughout the town and neighboring towns. In August of 2007, Ed and Meggan were notified that their unborn daughter was diagnosed with alobar HPE at 22 weeks gestation. Maeve Agnes Tierney was born on October 18, 2007.
You may contact Ed at Ed_Tierney@FamiliesforHoPE.org.
|
Josh Timmerman Noblesville, Indiana
Josh joined the board in September 2011. He began his involvement with Families for HoPE in 2006 as a volunteer, and since that time, he has used his passion as a race car driver to help raise awareness of HPE. By profession, Josh is a Financial Advisor with Edward Jones Investments.
You may contact Josh at Josh_Timmerman@FamiliesforHoPE.org.
|
Becky Wilson Crandon, Wisconsin
Mother to Jack
Becky joined the board of Families for HoPE in September 2011. She is the wife of Ken and mother of Charlie, Breanna and Jack.
Becky can be reached at Becky_Wilson@FamiliesforHoPE.org.
|
|
