Newsletter

2017: Vol 1- Family Conference- Navigating the Future

In this Issue

Navigating the Future Conference Sessions

Promoting Conference presenters

Board/Advisor/Staff list& New Board Intros

Family Voices: Grandparents, Aunties, Siblings at Conference

Research Opportunities at Conference

Curbside Consults at Conference

Redondo Beach Fun/Love Notes

New Dup15q Research Publications

Alliance Cheers our Volunteers – AND 2017 Conference Thank Yous

Family Story: “I Happy”

Remembrances

June 13, 2016
2016 Vol. 3: Growing a Strong Dup15q Alliance

INSIDE THIS ISSUE

THE DUP15Q ALLIANCE & SCIENCE
YOUR NEW EXECUTIVE DIRECTOR: VANESSA VOGEL-FARLEY
CLINICAL TAKEAWAYS FROM SCIENCE MEETING
REFLECTIONS ON THE EUROPEAN MEETING 2016
BELIEVE WALK
CHEERS TO OUR VOLUNTEERS
FAMILY PORTRAIT

(James Fink, seizures, neurons, dup15q fellowship, Kevin Hope, UBE3A, HERC2, clinics, dup15q database, nonsolo15, EEG, MRI, ACTH, Beleive Walk, Conference)

June 13, 2016
2016 Vol. 2: Celebrating Our Clinics

Celebrating Our Clinics by Nicole Cleary
Family Voices: Dup15q Clinic Experiences by Lisa Feehery, Colleen Lowell, and Teana Ebensperger
Meet a Dup15q Clinic Coordinator by Jennifer Young
Caravan to the Clinics by Kim Maring
Let's Get Together
Cheers to our Volunteers
Did you know?: Fundraising Facts
Family Portrait: He surprises us every day... by Robert and Adrienne Paradis
If I could write a letter... by Eileen Flood O'Connor
Nonsolo15 European Meeting by Alison Kalnicki
Announcements

(multidisciplinary approach, sleep issues, seizure control, gastroenterologic issues, neuropsychological issues, Professional Advisory Board, Dr. Dimitrios Arkilo, Minnesota Epilepsy Group, Dr. Carolyn Schanen, Dr. Thibert, Boston clinic, stimulant attention medications, Seattle clinic, Dr. Marcio Sotero de Menezes, commonalities, St. Paul clinic, relationships, Multidisciplinary Clinic Database, medical care, research, targeted treatment, regional gatherings, Believe Walk, awareness, secondary diagnoses, Applied Behavior Analysis)

February 18, 2016
2016 Vol. 1: Support is a Verb

Support is a Verb by Nicole Cleary
Change is Inevitable; Growth is Optional by Tom Doyle
Transitions by Kadi Luchsinger
Issues in Early Adulthood: Guardianship by Paul and Anne Karch
Guardianship Around the World
Remembering Michael John Hauler
Dup15q Clinics Update by Jane Kim
Gastrointestinal Problems in 15q Duplication Syndrome, European Journal of Medical Genetics
Alliance Welcomes Three New Board Members by Deirdre Popp
Family Portrait: She Lives a Very Full Life by Debbie & Shannon Neller
International Dup15q Medical Registry Update by Rylie McHam
Get Involved: Dup15q Alliance Committees
Announcements

(Kadi Luchsinger, Executive Director, resignation, Tessa Quinlan, Elaine Lowell, David Gifford, lawyer, Wisconsin, guardian, 18 years, legal issues, Australia, Italy, Canada, Memphis, Pennsylvania, Boston, central database, statistics, sleep habits, GERD, constipation, GI, behavior medication, questionnaire, committees, help, volunteers, fundraising, sunshine, conference, regional gatherings, research, family, finance, public relationals, webinar, website, Believe Walk, The Mirror newsletter, Rare Disease Day, $15,000 in 15 Days)

October 1, 2015
2015 Vol. 3: We are Stronger Together

We are Stronger Together by Alison Kalnicki
2015 Annual Dup15q Scientific Meeting by Guy Calvert
Dup15q Alliance Funds Research by Carolyn Schanen
Cheers to Our Volunteers - Conference Volunteers
Photos from the Family Conference
Dup15q Alliance Financial Report by Tom Doyle
List of Board Members and Advisory Board
Reflections from a Sibling: Chas Karch
Family Portrait: I Had No Idea by Robert Swirsky
Reflections from a Grandparent: Our New Ohana by Cris Meria
New Store Items

​(Orlando family and science conferences, Rick Guidotti, UBEA, Jason Yi, Stormy Chamberlain, Olena Marchenko, mathematical models, Scott Dindot, mouse model, Franck Kalume, clinical research, SUDEP, EEG, Dimitrios Arkilo, Ron Thibert, Shafali Jeste, VNS, vagus nerve stimulator, seizures, autism, fellowship grants, Kevin Hope, Larry Reiter, James Fink, Eric Levine, fruit flies, brain neurons, Fernando Gomez, Paul Karch, Katie Supina, Karen Sales, Rachel, Hoelden, Urijah Ramiro, Mickey Mouse, Disney, Florida)

May 12, 2015
2015 Vol. 2: Promoting Independence

Promoting Independence by Nicole Cleary
Promoting Independence in the Young Child by Cynthia Mininni
Promoting Independence for Those Impacted by Dup15q by Therese Fimian
Independence: Family Stories by Ann Tiplady, Adelle Madison and Michelle Beres
​Stronger Together: 2015 Conference Research Opportunities
Cheers to Our Volunteers: Linda Meagher
Reflections from Siblings: Katy has brought so much joy to my life by Lauren & Greta Jo Bussian
Reflections from a Grandparent: What got me was the first time she said Nana by Sherrill Beaudoin
​A Very Special Boy by Alicon Johnson
Links of Love fundraiser
Dates to Remember

​(jobs, routines, communication devices, sleep, work, autism study, balance study, FaceBase, genetic counseling, tooth collection, board member, committees, sunshine, sisters, horses, Little Miss Sunshine walk, Memphis clinic, believe walk)
 

January 30, 2015
2015 Vol. 1: This is Your Conference

Stronger Together: This is Your Conference by Alison Kalnicki
​Hot Conference Topics
Conference Who's Who: Your Conference Presenters
Conference Research Passport: Research Opportunities at the Conference by Kadi Luchsinger
Cheers to Our Volunteers: Sandy James
Dup15q Syndrome Research Update
Reflections from a Grandparent: Ella Rearranges My Life by Geraldine Puttick
​Reflections from Siblings: She Always Shows People She Loves Them by Kelley and Lucas Mullen
Family Portrait: Arielle's Story by Angelic Yao
Upcoming Meetings and Announcements

(2015 conference; family conference; cannabinoids, seizures, vision, PODDS, communication, potty training, Rick Guidott, Postitive Exposure, financial planning, career planning, Robert Naseef, Edwin Cook, Orrin Devinsky, Brenda Finucane, Rylie McHam, Donna Richards, Mike and Jeff Rozovics, Cell Lines, Coriell, Registry, Tooth Kits, Reiter tooth study, Face Base, clinics, REN, Rare Epilepsy Network, documentary, Jo Ann Santangelo, Nicholas Stokes, Ella Lawson,  Kathleen, Rare Disease Day, Believe Walk)

September 22, 2014
2014 Vol. 3: Learning Together

Learning Together by Nicole Cleary
Science Meeting: Two Sides of a Coin by Guy Calvert & Jane Kim
Dup15q Clinics Meeting Report by Jane Kim
The Alliance Board Welcomes Adrienne Campolmi
Dup15q Alliance Board Report by Paul Karch
​Cheers to Our Volunteers: Dana Tilton
​The Reasons We Smile by Collin Kobuszewski
Family Portrait: A Moment to Remember by Ed & Mary Ellen Gibbons
Reflections from a Sibling: Cathal Fills Your Heart with So Much Love by Emma O'Reilly
​Reflections from Grandparents: She Has a Winsome Way of Relating to People by Margery & David DeVilder
Upcoming Meetings and Announcements

(Angelman Syndrome Foundation, UBE3A, animal models, brain tissue, human stem cells, clinical research, clinics, Shafali Jeste, Connie Kasari, UCLA  autism study, Orrin Devinsky, cannabinoids, Ed Cook, edge duplications, Ron Thibert, medications, epilepsy, seizures, best practice guidelines, Jackson, strategic plan, survey results, five-year goals, Tyler, graduation, Kathryn, Anneliese Morgan, webinar schedule)

June 2, 2014
2014 Vol. 2: The Dads of Dup15q

The Dads of Dup15q by Nicole Cleary
The ACE in Her Life by Paul Rivard
​Seattle Race
Father's Voices by Richie Bopp, Tim Cleary, Fernando Gomez, and Ron Bruce
Dup15q Alliance Clinics and Registry: Two Databases, One Goal by Jane Kim and Rylie McHam
New Website by Kim Maring
Family Portrait: A Dad's Encouragements by Richie Baker
Cheers to Our Volunteers: Sarah & Chad Torrance
Reflections from Siblings: A Huge Impact on My Life by Dylan Ritter
Reflections from a Grandfather: We Marvel at the Progress by Bob Peterson
Upcoming Meetings and Announcements

(Father's Day, Megan, Fundraiser, Lowell, Riley, Travis, William Sales, Karen)

January 6, 2014
2014 Vol. 1: Celebrating 20 Years

Celebrating 20 Years by Kadi Luchsinger
Financial Update: Investing in the Next 20 Years by Tom Doyle
What's in a Name by Guy Calvert
20 Years of Family Support by Donna Bennett, Joanne & Len Poore, Deb & Bruce Lindgren, Patti & John Rubel, Sheryl Kaminer, Jeanine & Bill Rossbach, and Margaret Kelliher Gibson
Cheers to Our Volunteers: Traci Ward, Paint the Town Blue
Family Portrait: An Exciting Time is in Your Immediate Future by Rod and Lanae
​A Visit to the New Seattle Clinic by Colleen Lowell
Reflections from Siblings: Living with Andrew by Geoff Keller
Reflections from Grandparents: A Special Grandchild by Sue and Tom Thibedeau

​(anniversary events, chromosome 15q11.2-13.1 duplication syndrome, 15q13.3, 15q11.2, microduplications, mission, fundraising, history, 5k, fundraiser, Alabama, Swedish Medical Center, Ryan Supina, Andrew)