Hadley Hope - Raising Awareness of Niemann- Pick Type C Disease


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Special Thanks

We wish to thank the following individuals, organizations, and businesses who have so graciously and generously given of their prayers, time, talent, goods, and/or services to help our family and others afflicted with NPC. We are so uplifted by the outpouring of support we have experienced and hope that you will support those that have supported us. 

Faith, Hope, Love

Volunteer Spotlight  

 In January 2009, after being approved as a non-profit foundation, we began to form a Board of Directors consisting of community members who were touched by the lives of our children. Carolyn Younker quickly stepped up to assume the role as our Treasurer and has been with us from the very beginning.  She not only brings her expertise in accounting, but a heart of gold that truly exemplifies what it takes to be a volunteer for a non-profit. Carolyn and her wonderful family reside in Medford and are fellow parishioners at Sacred Heart Church.  She grew up in San Diego, received her Bachelor’s degree in Business from San Diego State University, and received her MBA from Thunderbird Graduate School of International Management in Arizona.  After moving to Medford in 1992 with her husband Shan, she has been active in the community through church and through other community groups such as Soroptimist.  Carolyn and her husband have two children, Brooke 14 and Scott 12.  Previously Carolyn has done accounting for the St. Vincent de Paul Society and for Sacred Heart Church.  We are so grateful for the countless hours Carolyn has dedicated to event set up, organization, research of various programs, and overall financial responsibilities for the Hadley Hope Fund.  We cannot thank her enough, and would like to salute her many efforts.  THANK YOU Carolyn, for going above and beyond in all you do, and for your perseverance and dedication to serve our children and the many others in need of a cure.



Persevere Cell Phone Pouch Donations

  Accessory Geeks , a leading national cellular accessory online retailer, long time clients and close friends, have offered to donate all profits they receive from sales of the newly designed Persevere cellular phone case. The universal cell pouch fits most phones, and signifies the word the National Niemann-Pick Disease Foundation has coined: PERSEVERE . The scriptural words are listed below the logo: “ Blessed is the man who perseveres under trial . James 1:12 We’d like to thank Accessory Geeks for supporting us in our endeavor to fight this disease, and assist in funding research for all suffering from this affliction.


Evening of Hope

Love and support filled the room. Every detail taken care of. Faces and hearts overflowing with compassion. We are still stunned and astonished by the generosity of those that attended, those unable to do so, and the huge team of volunteers. The evening was filled with delicious food, great auction items, a few tears, and a beautiful family in which to share it with. Thank you to Carrie Smith, Mark Smith, Danielle Wheeler, Becki Cochran, Eileen O’Connell, Lisa Bock, Lisa Bell, Brian Morton: the emcee of the event, as well as their spouses, and ALL OF THE VOLUNTEERS that made this event so successful!! You helped raise $56,000 !! All of this was accomplished on a zero budget, with many sponsoring dinner entrees. We can’t thank everyone enough for this beautiful evening.


Birthday Party Donation

Teddie Savage & Ellie Hough celebrated their 10th birthday recently, and rather than receiving presents, they chose to generously donate their “present” money to the Hadley Hope Fund instead. A heartfelt “thank you” to these girls, their parent’s, and classmates that participated. They raised $580 toward research, medical expenses, and potentially a cure!!


Blood Fair for Research

Ed & Christy Cutler, owners of Phlebotomy Services International as well as employees donated an entire day to the collection of blood samples from “healthy” young children in our community to assist with research. These samples are critical in finding biomarkers for the drug, Zavesca currently being used on only half of NPC kids. It is essential they find these markers so the drug can be approved for NPC, and measure effectiveness of new therapies and other drugs. Researchers are so indebted to Ed, Christy, Janelle, and ALL of the families and children who so generously gave of their time and blood for us and other NPC children!! They had over 40 samples sent to Dan Ory’s research lab in St. Louis!!

Update 07/09: The NIH is starting a clinical trial to identify a biomarker to be used in NPC research, due largely to in part because they were abole to test against these "control" samples.

Update 8/08: Dan Ory’s lab is very close to identifying biomarkers within plasma and urine from “normal” kids samples, and is seeing significant differences in NPC patients.


Hadley Hope Day: St. John Vianney’s School Donation Drive; San Jose, CA

Peyton, Kayla, & Jonah’s cousin’s Julia, Tessa, & Brianna attend St. John Vianney’s, and they along with their mother and father, felt moved to help our family fight this rare disease. They asked for students to bring donations to school to help support us on May 4, 2008. We are very overwhelmed by the outpouring of support from a school and student body we don’t even know. How beautiful God is, and we are truly moved by their hearts that perfectly display a heart of Jesus. Thank you so much St. John Vianney’s parents, long time family friend & Principal: Sister Michele Anne, and student body. We are indebted to you for opening your hearts to us and helping us raise $3550.02!!


Jean’s Day @ LandAmerica Lawyer’s Title

Shelly Berryessa and fellow co-worker’s at LandAmerica joined together to raise funds for NPC on Friday, April, 4, 2008. Each employee who participated paid $5.00 to wear jeans on that day, and they raised $295!! Thank you so much to all LandAmerica employees for your generosity and kindness.

3-4-08 thru 3-18-08

Easter Hope Challenge   

Jessica Gordon, a kind and compassionate fellow parishioner from Sacred Heart Catholic Church, felt compelled to help our family after she heard of our children’s recent diagnosis. On her beautifully designed blog site:

http://showerofroses/blogspot.com , she challenged others within our tightly knit community to donate to Hadley Hope. Our sincere appreciation goes out to all those who participated, as well as Jessica who spent time on the beautiful basket donated, as well as collecting money from the Hope Challenge.You helped raise $3250 which will go towards medical expenses and research and we are in awe over what you have accomplished!!   


Poker Night

Brian Moyer organized a couple of fun-filled evenings for the guys to help raise money for the Evening of Hope Event to be held June 14, 2008. The poker night consisted of a Texas Hold’Em Tournament, and about 20 people attended the first, and 12 the second event. Both times, the generous winners donated all of their winnings back to Hadley Hope!! Wow. Thank you to all who participated and continue to support us. These events raised close to $1000 !! We are grateful to each and every one of you, and are glad you had some fun at the same time!  


Million Dollar Club Donation   

The Million Dollar Club was presented with our situation by Carrie Smith, Principal Broker of Western Properties of Southern Oregon. (She told me she usually can keep it together, but her tears just flowed, and everyone’s hearts were moved by our children’s condition.) Even in hard times, people are so willing to give, and we extend our gratitude to the association for their donation of compassion and love, and to Carrie for her beautiful heart of love for our kids. They donated $1000 to our mission!

3-8-08 & 3-9-08

Wine Tasting at the Capitol & Hadley Hope Basketball  

A special “thank you” goes out to Allison Scoggins , (aunt to our children), for the hundreds of hours she spent on making Wine Tasting at the Capitol, and Hadley Hope Basketball Game a huge success!! Thank you also to all of the sponsors, participants, and spectators that came out to support our family and other children with NPC. We are indebted to you for all of your effort, love, and support. Both events combined raised approximately $30,000!!! Thank you from the bottom of our hearts! May God bless all of you.  

1-1-08 to 2-1-09

Totally Cellular 2008 Pledge

The Alexander Family, long time friends and clients of our cellular business have so generously pledged $1 for every cellular accessory sold in their 20 stores across Oregon every month for the entire year of 2008!! Not only do we appreciate their financial donation, but their ongoing prayer support and emails really lift us up when we feel emotionally exhausted. Thank you so much for your compassion and kindness you have shown our family. Their pledge will help defer medical costs and fund research to find a cure.


A sincere and heartfelt thanks goes out to the following people who have so willingly given of their time and treasure to help us on this journey:

All Anonymous Donors & Prayer Warriors - Glen Antle - Mel & Brooke Ashland - Donna & Scot Austin - Cyndi Ash - Courtney Bansmer - Janece Bansmer - Joseph Barcomb & Julie Waters-Barcomb - Travis Beard - Jim & Lisa Bell - Cassie Belmodis - The Bock Family - Clair Bock - Diana Butts - Jose & Gina Cepeda - Dan Crocker - The Carmeci Family - Father Liam Cary Marie Chandler - Becky & Toby Cochran - Nancy Collins - The Cutler Family - Nicole & Alex Delasio - John Dennehy - Michelle & Lou DePoyster - Byron & Sammie Eaton - Tug & Regina Ferguson & Family - Casie Ferguson - Jamie Ferguson - Terry Fry - John, Teresa, Julie, Tessa, & Brianna Gallo - Andrea Freel - Charles Frombey - Julie Galey - Dona Gelsinger - Eileen & Jim Givens - Tom & Sandy Gomes - Leann Goodenberger - Jessica Gordon & Family - Father Robert Fath - Anne Gross - Dan Gutman — Sue & Allan Hadley - The Hammer Family - The Hansen Family - Pee Wee Harrison - Harold & Diane Haugen - Carolyn Hedrick - Mike & Ann Hillman — Don & Kathy Hogge - Michelle Hoque - Peggy House - Julie Hoy - John & Nicol Isola - The Jantzer Family - Travis & Carrie Jantzer - Kelly Jantzer - Craig & Cathy Johnson - The Jones Family - Nita Joseph - Mark & Kathy Kantor - Patty Keck - Hilary Kemmling - Jenny King - Monsignor Barry Knestout Hanna Knutson - Sue & Vic Kosmatka - Peter & Eileen Kralik Mike Krumwiede - Sonnie Lee - Maggie & Jim Lowman - Aleesa McCarthy - Meadowlark Lemon - Donna & Rod Manning - Father Jeff Meeuwsen - The Millenheft Family Nanette Mitchell - Sister Inez Marie - Margaret Miller – Ryan & Trina Millenheft - Gordon & Sally Montgomery - Steve & Annette Morgan - Ann Morris - John Morris - Brian & Laurie Morton - Brian Moyer - Rich & Connie Moyer - Sister Michele Anne Murphy - Pat & Jo Murphy - Eileen & Steve O’Connell - Poor Clare Sisters of Perpetual Adoration D.C. - The Paleses Family - Donna Patella - Danielle Perone - Susan Prulhiere - Don Reilhman - Peter & Susan Reilhman - Karen & Ed Reis - Paige Roady - Chuck Robinson - Bill & Paula Savage - Dr. Jim & Jackie Savage - The Savage Family - Allison Scoggins - Jason & Jodi Setzer - Myrna Shaneyfelt - Diane Shenk - Chris Sinclair - Kyle Singler - Skip Skeen - Mark & Carrie Smith - Scott & Connie Smith - Matt Spivey - Tessa Spivey - Dr. Ken & Jen Stringer - Dean & Nancy Sweeney Suzanne Teal Father Andrew Thomas Marianne Thompson 7 year old, Sam Vanommen who felt the Lord was leading him to give a gift - Gretchen Twill - Larry Twill - Gerrit & Tracie Vanommen - St. John Vianney’s School: San Jose, CA - Sue Watillo - Jeff & Danielle Wheeler - Joanne Wheeler - The Wheeler Family - Kathleen &Tom Wilson - Madeline Wilson - Zach Zeek - Kathy Zoll


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