31 Days of Thanks for Giving

Day in and day out, there are people behind the scenes working their magic to give all of the super dupers a better tomorrow.  This holiday season, we would like to thank all of the wonderful people who have taken time out of their busy lives during 2017 to fundraise, advocate, and raise awareness for the Dup15q Alliance.  Each day, we will share the names of individuals and groups of people that we are all extremely grateful for.

There will be a daily Social Media post and you can follow the us here: to see who has been added each day or to see the complete list!
 
It's been a very bright year and we look forward to meeting and exceeding our expectations in 2018!  Together we BELIEVE; Together we ACHIEVE!
 

Today, we would like to thank all of the families who participated in our #GivingTuesday campaign via Facebook on Tuesday, November 28th. With the simple update of a status and the click of a button, you all helped raise $9500 for the Dup15q Alliance! $10K will fund a Dup15 clinic for an entire year! Way to go, everyone!
 

Today, we give thanks to our Chromosome Q-usaders! Chromosome Q-usaders are Dup15q Alliance members who have gone above and beyond to raise funds and awareness about Dup15q Syndrome. All of these fundraisers directly support the Dup15q Alliance's mission of encouraging personal philanthropy that helps underwrite research, offer potential treatments, and provide support to all Dup15q Alliance families. 
Thanks to ALL of you for fighting to give our children a better tomorrow!        

Tom Doyle, Board Chair

Tom has selflessly served the Dup15q Alliance since 2009 in many capacities. Tom’s love for his granddaughter, Grace, has driven him to devote his time to lead our Board of Directors as our current Chairman. Throughout his terms, Tom has used his background in mentorship and management to support all of the families that the Dup15q Alliance serves as well as to drive the Alliance forward. We are truly thankful for the time and energy he dedicates to the organization.

                                                                                                                                Tessa Quinlan, Lifetime Chromosome Q-usader, Board Member, Conference Chair
Tessa serves the Dup15q Alliance in so many roles: mom, advocate, fundraiser, and organizer! Tessa is our first Chromosome Q-usader to be announced, an honor she has earned for her tireless efforts in hosting the GQ fundraiser in honor of her duper, Gavin Quinlan. Over the time Tessa has hosted this event, she has raised record breaking amounts of money that the Alliance has been able to use for treatments and research. Tessa joined the board so that she could help raise awareness about Dup15q Syndrome, and learn more about it herself! As if Tessa wasn’t busy enough, she also took on the role of Conference Chair for the 2017 conference and will be doing it again in Houston in 2019!

Vanessa Vogel-Farley, Executive Director
The Alliance families are so fortunate to have Vanessa as their Executive Director. Vanessa offers personal support to each and every family that comes through the Alliance, including families with prenatal diagnoses. Vanessa works tirelessly each day to build relationships with clinicians, researchers, and other groups that share Dup15q Syndrome related symptoms in order to offer the best systems of support to our families and build collaborative relationships. Vanessa is determined to find effective treatments for all of the children living with Dup15q Syndrome and has shown all of us how truly invested she is in our families.

                                      

Dr. Shafali Jeste, Professional Adivisory Board/ Dup15q Clinician                            In addition to being a dedicated member of our Professional Advisory Board, Dr. Jeste established the dup15q Clinic at UCLA and has a dedicated dup15q syndrome research program in her lab. Dr. Jeste has designed innovative studies in early predictors of autism to focus on the integration of biomarkers with the behavior to define atypical development prior to the onset of clinical symtoms of autism. She brings her amazing combination of research and clinical prowess to the Dup15q Alliance communtiy and we are thankful for her state of the art approach to dup15q syndrome. 

James Borden, Chromosome Q-usader because of Running for a ReasonAn avid runner, James (aka Jimmy) decided to turn his passion in to a mission to support his duper, Andrew, who inspires Jimmy every day. Jimmy decided to take on the NYC Marathon (his first marathon!) on November and worked tirelessly to train for this grueling event. Jimmy ran 26.2 miles to raise awareness for the physical challenges his son Andrew (and all of those living with Dup15q Syndrome!) endure on a daily basis and to raise funds that will allow the Alliance to offer support to all of our families. Thank you, Jimmy—you are truly inspiring!

 

Lindsey Borden, Regional Representative
Lindsey is mom to duper Andrew (and the wife of our Q-usader Jimmy) and serves as a Regional Representative for the Dup15q Alliance. In this role, Lindsey will be your first point of contact for a family who joins the Alliance and has the daunting task of answering all of the questions we have after we leave the doctor! Lindsey is also in touch with the Alliance and helps to put together resources for families in her area and strives to continue to improve this process. Thanks for helping all of us through challenging  times!

 

Adrienne Felterman, Dup15q Alliance accountant; Kendra Scott fundraiser                      A big "THANK YOU!" to Adrienne for volunteering her time to serve as the accountant for the Dup15q Alliance! Adrienne is mom to duper Charles,  With all of these amazing fundraisers, we have been keeping Adrienne busy, but she does it with a smile :) Adrienne has also organized the Kendra Scott jewelry fundraiser which is happening this Friday! Click on the link to get your order in just in time for the holidays.  Thank you, Adrienne, for organizing this fundraiser for our families!

 

Earlier this year, Cortney Manning reached out to the Believe Committee to seek assistance hosting a fundraiser in honor of daughter, Brielle.  With much planning and tons of hard work, Cortney's "Believe in Brielle" event boasted over 35 baskets up for auction AND a vendor event in which vendors donated a percentage of their sales to the Alliance! Cortney, we know you work full time, go to school, and have a family, and we are amazed and thankful that you still found time to coordinate this amazing event!

 

Emmylou Allen - Regional rep                                                                                   Mom to duper Kelsey, Emmylou proudly serves her region! Emmylou ran the dupers under 5 group at the conference this year and was a wealth of information for all of the parents new to the Dup15q diagnosis.Emmylou's experience, knowledge, and compassion make her the perfect regional rep.  Thank you for helping our families during difficult times.

 

     

 

Dr. Dimitrios Arkilo, Professional Advisory Board 

Dr. Arkilo has served the Dup15q Alliance in many capacities.  As a well-regarded clinician with a special interest in the neuropharmacology and genetics of epilepsy he ran the Dup15q Alliance Clinic in Minnesota for several years and has now transitioned to a role at Sage Therapeutics. He also plays an integral role in our Professional Advisory Board stemming from his extensive academic, clinical and industry experience in therapeutics development.

 

Heather Sheldon, Chromosome Q-usader, Miles for Myles 

Heather has been working hard to raise funds for the Alliance from England! This year, Heather has coordinated 3 separate fundraisers: grocery bagging in a local market, which allowed for awareness and also brought in funds, a “Running for a Reason” event done by Heather’s friend Tracy called Miles for Myles, in which Tracy raised funds in honor of duper Myles, and a psychic fun night, where attendees paid for a session with a psychic and the proceeds were donated to the Alliance! We can’t wait to see what fun and exciting events Heather comes up with next.  Thank you, Heather!

        

Dr. Scott Dindot, Professional Advisory Board

Dr. Scott Dindot brings expertise in animal models of disorders to our Professional Advisory Board. He is an Assistant Professor in the Department of Veterinary Pathobiology at Texas A&M University. Dr. Dindot lead the charge in the creation of the UBe3A over-expression mice to investigate the role of the UBe3A in dup15q syndrome. His current projects include: Elucidating the mechanisms regulating genomic imprinting of Ube3a in neurons, and examining the neurological function of the human UBE3A isoforms, We thank Dr. Dindot for his continued dedication to the Dup15q Alliance Professional Advisory Board.

 

Stefanie Lebailly, Chromosome Q-usader, Believe Walk France

The Dup15q Alliance said "Bonjour" to its first ever Believe Walk in France in 2017! A lot of time goes in to planning a Believe Walk and Stefanie was essentially an army of one. But never underestimate the power of a woman on a mission! Stefanie, you rocked the Believe Walk and we're sure you've started an international trend. 

 

Krissa Harris, Chromosome Q-usader, Blue for Dup15q & t-shirt sale
Though Krissa tried to avoid Facebook all together, once joining, she realized how much of an impact social media can have on fundraising and awareness. With the help of her sister, Krissa was able to organize a "Blue for Dup15q" in her sister's school to raise money for the Alliance. Krissa was also determined to make a lasting impact with awareness and had "Hattie's Warriors" shirts designed for fundraising purposes. Krissa's efforts were a tremendous success and people all over the USA are proudly supporting Hattie and wearing blue for Dup15q! 

 

Elyse Linderman, Administrator, Dup15q Alliance 
The Alliance welcomed Elyse in the middle of 2017 and we couldn't be happier to have her on board! Elyse does all of the things you never even knew needed to get done...and then some! Elyse brings a wealth of knowledge to the non-profit world and is extremely passionate about making a difference for all of our dupers. We know that Elyse is going to help make 2018 amazing! Thanks for a great 2017!

 

Janine M. LaSalle, Ph.D, Professional Advisory Board

Dr. LaSalle is a professor of Microbiology and Immunology at the University of California, Davis. Dr. LaSalle’s research focuses on the epigenetics of neurodevelopmental disorders, including 15q11-q13 disorders. Her expertise in DNA methylation brings the investigation of gene and environmental interaction to the dup15q community. For her forward thinking and detailed work in dup15q syndrome, we are thankful!   

 

Laura Stark, Chromosome Q-usader, Crawling for a Cure

 

Who says inviting a few friends out for a good time can't be financially rewarding? When Laura found out a local bar crawl was taking place, she seized the opportunity to get the Alliance included! Laura invited many (many!) friends and they all came out to crawl for a cure! Good friends + cold drinks = one successful event! Cheers, Laura--we appreciate your efforts! 

 

 

John Nation, Super Duper

Shout out to duper John Nation for naming the newest colt at Clydesdales Barn! John has been going to Clydesdales Barn for years and making amazing connections with the horses there. A contest that yielded 4000 votes from 12 countries ended with choosing the amazing name, Nation, in honor of the tremendous bond John has had with all of the animals during his time spent at Clydesdale. We love your big smile and your enthusiasm for life, John! And your mom...she keeps us laughing all the time Thank you, both, for your positive thoughts and stories that keep our members motivated!

 

 Dr. Orrin Devinsky, Professional Advisory Board 

After treating a few patients with Dup15q, Dr. Devinsky knew he wanted to be more involved with this organization. One of the areas in which Dr. Devinsky focuses much of his research on is epilepsy. Specifically, Dr. Devinsky is interested in cannabidoil, SUDEP, phenome-genome correlations, ataluren, healthful behavioral changes, autism, therapeutic electrical stimulation, quality-of-life, cognitive and behavioral issues, and surgical therapy. He is the Principal Investigator for the North American SUDEP Registry and for the SUDC Registry and Research Collaborative. He founded Finding A Cure for Epilepsy and Seizures (FACES) and co-founded the Epilepsy Therapy Project and epilepsy.com. As there is a high prevalence of epilepsy and seizures in those with Dup15q, Dr. Devinky's research is especially important and meaningful to all of us. We thank Dr. Devinsky for his fierce dedication to finding a cure for Epilepsy and seizures and believe that some day, we won't have to worry about them any more.

Lacey Berger, Chromosome Q-usader, Communities for a Cause

Lacey took eating out to a whole new level when she set out to do fundraisers on the 15th of each month with local restaurants. "Communities for a Cause" encourages diners to come out to the hosting restaurant and know that their meals have a meaning. A percentage of all meals purchased on the night of the event were donated directly to the Dup15q Alliance. Lacey has already lined up two restaurants and there are certainly more forthcoming! On 11/15, City Barbeque was the host and diners came in from 10AM - 10PM! This month's event will be held at Blaze Pizza on 12/15 from 5PM - 8PM and 20% of your bill will be donated to the Alliance! Lacey, thank you for encouraging your community to "dine for dollars"--we appreciate all of your hard work!

 

Stormy Chamberlain, Professional Advisory Board
We are extremely lucky to have Stormy Chamberlain, Ph.D.
Dr. Chamberlain as a member of our Professional Advisory Board. Dr. Chamberlain is currently an assistant professor in the University of Connecticut’s Genetics and Developmental Biology department, and is assistant director for UConn’s Graduate Program in Genetics and Developmental Biology. Dr. Chamberlain established her own lab at UConn in 2009, using induced pluripotent stem cells (iPSC) to model and study human imprinting disorders focusing on Dup15q syndrome as well as other 15q11.2-13.1 related disorders (Angelman Syndrome, Prader-Willi Syndrome). She recognizes the importance of collaborative research and works with many other dup15q syndrome investigators in order to drive science forward.