Newsletter

December 1, 2013
Fall 2013: Together we are Moving the Science of Dup15q Forward

Together We Are Moving the Science of Dup15q Forward by Nicole Cleary
Dup15q Science Meeting Report by Paul & Anne Karch
​7th Dup15q Clinic Opens in St. Paul, Minnesota 
Nonsolo15 Annual Gathering by Laura Piredda
Dup15q Alliance Registry Update: Filters are Now Available for Chart Data by Rylie McHam
Dup15q Alliance Financial Update by Tom Doyle
Family Portrait: Klara Belle by Michelle Beres
​Cheers to Our Volunteers: Jane Kim, Dup15q Clinic Coordinator
Reflections from Siblings: Our Sister Megan by Brooke and Kyle Rivard
Reflections from Grandparents: The Love of Grandparents by Pepe and Marga

​(genetics, sleep, autism, UBE3a, bio chemistry, cell, animal models, mouse, pig, research, Italy, scientific conference, Noa, Spanish)
 

September 2, 2013
Summer 2013: Our Dup15q Family Has Grown

Our Dup15q Family Has Grown by Nicole Cleary
Celebrating the Beauty of Dup15q
​First Conference Perspectives from Around the World
Living on the Edge: Duplications of 15q at 11.2 and 13.3 by Guy Calvert
Dup15q Alliance Registry Update by Rylie McHam and Kadi Luchsinger
Annual Board Meeting Report by Linda Meagher
​Family Portrait: Stepping Forward with Mason by Jaime Murphy
Cheers to Our Volunteers: Rachel Pomainville
Reflections from a Sibling: Little Bear by Rebecca Segars
Reflections from Grandparents: Denny and Judy Lager

(2013 Conference, Minnesota, Rick Guidotti, Positive Exposure, photos, microduplication, core, chromosome, seizures, elections, blog, wordpress, Luke, autism, Avery)

 

August 29, 2012
Summer 2012: The Mission

From the Editor by Jean House
A New Way for Families in the UK to Support Research by Brenda Nally
2013 ​Conference Reminder: Reach for the Stars in Minneapolis
Mouse Model Holds Promis for Unlocking Secrets of Dup15q by Guy Calvert
Regional Representatives List Correction
Research News by Kadi Luchsinger
More Teeth Please
Financial Report by Tom Doyle
Corporate Officers and New Board Members
Organizing a Fundraiser by Tessa & Mike Quinlan
Siblings, You're Not Alone: Books for Sisters and Brothers of Children with Dup15q
Cheers to Our Volunteers: Dana Tilton by Len Poore
Dup15q Alliance Registry: A Resource for Families and Researchers
Family Portrait: Aeriel's Story by Bretigne Calvert
Reflections from a Grandmother: The Gift of Grace by Elaine Lowell
List of Upcoming Events

(mission, family support, awareness, targeted treatments, Brain Bank for Autism, Autism Tissue Program, NHS, Larry Reiter, Orrin Devinsky, SUDEP, Scientific Meeting, study, GQ, Gavin, raffle)

June 4, 2012
Spring 2012: New Beginnings

From the Editor by Jean House
Dup15q Registry Off to a Good Start by Nicole Cleary
Patient Number One at the Dup15q Clinic by Karen Sales
The New Fundraising Incentive Program by Mike Porath
Financial Report: End of Fiscal Year by Tom Doyle
Organizing a Fundraising Team by Tessa and Mike Quinlan
​Announcements: Store and Company Match
2011 Meeting in Italy by Lorenzo Cerutti
Serving Spanish Speaking Families by Fernando Gomez
Announcing Regional Representatives by Rylie McHam
In Memoriam: Sam O'Donovan
​Our First Benefit Rock Concert by Nancy Barnett
Cheers to Our Volunteers: Nelson Barnett

(Ron Thibert, William, Massachusetts General Hospital, conference registration, donations, Asociacion IDIC 15, memory, memorial, Roland, Plugged-In)

November 16, 2011
Fall 2011: Our Dup15q Family

From the Editor by Jean House
Wish You Were Here: Fun and Fellowship at Regional Gatherings (California - Sarah Porath, Midwest - Deb Lindgren, Ohio - Rylie McHam)
Family Favourites: How has your dup15q family been a help to your family?
Fundraising Update by Mike Porath
​Registry Update by Kadi Luchsinger
Financial Report: 2011 3rd Quarter by Tom Doyle
Research Update by Rachel Doucette
​Family Portrait: The Journey with Janell, Finding Understanding and Acceptance by Stephanie Barmann
Reflections of a Grandfather by Roland Rivard
Cheers to Our Volunteers: Karen Sales
Reflections from a Sibling: Kaitlyn & Melissa Markwell
Join BigTent and Tips

(favorites)

August 10, 2011
Summer 2011: 2011 Conference Review

From the Editor by Jean House
Our First Conference: Discovering a Safety Net Within Our New Reality by Coco M. D'Ascola
​News and Notes from the Conference - IDEAS Evolves to Dup15q Alliance, International Registry is Live, Start Planning for 2013 Conference, Announcing First Dup15q Center)
Conference Survey Results
Photos from 6th International Conference by Rick Guidotti, Positive Exposure
Family Favorites: Share Something You Gained from the Conference
Financial Report: 2011 Second Quarter by Tom Doyle
Family Portrait: Our Dreams for Emily by Maria Santarpia
Cheers to Our Volunteers: Debbie Boyd and Donna King by Len Poore
​Reflections from a Sibling by Chas Karch
​Changes on the Board
Write for The Mirror
Corporate Offices and Board Members
Join BigTent & Tips

(name change, clinic, Minneapolis, Rachel)
 

May 24, 2011
Spring 2011: Getting Moving

From the Editor: Jean House
Announcing the New Dup15q Medical Registry by Kadi Luchsinger
​The Pather to a Tae Kwon Do Black Belt by Len Poore
​Special Olympics Unified Sports: Winning is Second to Acceptance by March Edenzon, President of Special Olympics New Jersey
Surfers Healing: A Day for Kids and Families by Jean House
Family Favourites: Summer is just around the corner, and it's time to get outside and get moving. What is your child's favorite sport or physical activity and how has it been beneficial?
Half Marathon for IDEAS Nets $17,000 by Mike Porath
New York Bike Race Benefits IDEAS by Tom Allen
Cheers to Our Volunteers
IDEAS 2011 First Quarter Financial Report by Tom Doyle
Family Portrait: Without Valleys There Would Be No Peaks by Buffie Guetersloh
Reflections from a Sibling: Samantha Nardi
IDEAS Corporate Officers & Board Members
Join BigTent Today & BigTent Tips

(Lisa, run, fundraiser)
 

March 1, 2011
Winter 2011: IDEAS 2011 Conference United We Stand

From the Editor by Jean House
Hi Ho, Hi Ho, It's Off to the Conference We Go by Jill Baker
Conference Fast Facts
If Acceptance Does Not Mean Giving Up, What Does It Mean? by Robert A. Naseef, PhD
Wandering and Other Worries: Are You Prepared for an Autism or Dup15q Emergency? by Dennis Debbaudt
​Positive Behavior Support and Problem Behaviors: Multi-Component Interventions, Quality of Life and Identify Basic Causes
Vision Testing and Optometic Visual Training by Steve Gallop, OD
Educational Best Practices: What Should You Look for in a Program for Your Child with Dup15q Syndrome? by Barbara Haas Givler, MED, BCBA
​IDEAS 2010 Year-End Financial Report by Tom Doyle
Our Lives Changed by Deb & Bruce Lindgren
Family Favorites: Must-Haves for Traveling
Cheers to Our Volunteers: Kadi Luchsinger and Cindy Johnson
In Memoriam: Anna Miller
My Friend Ethan: A Story by Ethan's Friends by Andrew, Kiera and Cassandra

(eye exam, memory, memorial)
 

November 23, 2010
Fall 2010: All About IDEAS

All About IDEAS by Jean House
The History of IDEAS: How Did It All Begin? by Kadi Luchsinger
IDEAS Committees & Services: Fundraising, Sunshine, Conference Planning, The Mirror, Parent Match, Research, Public Relations, Website
Picture of 5th Annual Idic(15) 5k/15k Run
Financial Report: What About the Dollars & Cents by Tom Doyle
Celebrating 20 Years of the ADA by Rachel Doucette
Corporate Officers & Board Members
The IDIC(15) International Conference in Italy: Hope and Answers for Families
Short Family History of Board Members: Mike Porath, Rylie McHam, Cindy Johnson, Lisa Lightner, Patti Rubel and Donna Bennett
A Place at the Table by Eileen Flood O'Connor
Cheers to Our Volunteers: Jane True
Reflections from a Sibling by Kasaria Mackling

(Kaylor)

June 8, 2010
Spring/Summer 2010: It's Complicated

It's Complicated: What Researchers Have Learned and Are Still Trying to Understand About Dup15q by Jane True
IDEAS 2010 Scientific Meeting: Highlights and Summaries 
Changes on IDEAS Board
Cheers to Our Volunteers: Nicole Cleary
Reflections from a Sibling: Katie Lowell
A Letter from Heaven: A Tribute to Jake Miller
Our Son Adam by Patti Rubel
​Birthdays
Save the Date: 2011 IDEAS Conference

(agenda, dup15q syndrome, mortality, neuropath results, epigenetic alterations, idic(15), brain samples, homologous pairing chromo 15q11-13, breathing abnormalities, seizures, interstitial, autism, GABR3 mutation, corporate officers, board members, professional advisors, Grace, memorial)