News About AXYS and the X & Y Variation Community
AXYS is Committed to Pursuing Equity
Until now, AXYS has not explicitly stated our stance on the Black Lives Matter movement. AXYS acknowledges the disparity in diagnosis, treatment, and support of people of color. Instead of just a display of solidarity, we wanted to share with you our goals and future actions to work towards equity for people of color within the AXYS community.
Recently, AXYS held our first Families of Color call. The fundamental message, as said by Dalene Basden, is that people and families of color need AXYS to say “we are listening, and we are here to support you.”
AXYS Stands Against Stigmatizing Words used to Market a Film
AXYS has a deep level of concern and disappointment with the language used in marketing the film Rain Beau’s End. Although we have been in touch with the production team for 18 months, they have not responded to our requests to change the way they are marketing and describing the movie. Using false and disproven assumptions about a group of people simply to grab the attention of potential movie viewers shows a lack of compassion for those who could bear the brunt of this misinformation. This feels cruel, especially when a few changes in the choice of words would mitigate the damaging impact.
AXYS cannot endorse this film as we have not seen it. We have asked to view an advance copy, but have received no response to our request.
When the movie was initially brought to our attention, we had hopes that it would depict a family dealing with the struggles and joys of having a child with XYY. This still may be the case, but we feel the language used in their promotional materials is purposefully negative and sensational. We do not support their decisions. We recognize that promoting false stereotypes about people with XYY can be stigmatizing and harmful.
AXYS is committed, now and always, to supporting those with X & Y chromosome variations and their families.
New ACRC Clinic in New York City
AXYS is thrilled to announce that the Weill Cornell Medicine Klinefelter Syndrome Clinic, Weill Cornell Medical College in New York City has joined the ACRC. They see all X & Y variations; they see children and adults. Learn more on their website.
Welcome Dr. Lilian Cohen, MD MPH!
AXYS Welcomes New Board Member
AXYS is thrilled to announce that Justin Dausch has joined our board. Justin served as a volunteer for AXYS in the area of finance in 2019. An attorney licensed to practice in Pennsylvania and New Jersey, Justin can be called upon to guide AXYS on legal matters.
ACRC Clinic Spotlight: MassGeneral Hospital Klinefelter Syndrome Clinic
The MassGeneral Hospital Klinefelter Syndrome Clinic is the most recent addition to the ACRC (AXYS Clinic and Research Consortium). They offer care throughout the lifespan, from caring for those with a prenatal KS diagnosis to adults of all ages. While the clinic is named for KS, they specialize in all male X and Y chromosome variations, including 47,XYY, 48,XXYY, and 48,XXXY. Individuals with 47,XXX can also receive care at MGH through a separate team within the Medical Genetics department.
AXYS Executive Director Visits Michigan
My favorite part of serving AXYS as your Executive Director is getting to know our community. In mid August I was in Michigan visiting my family and had the pleasure to meet 7 families in our community.
Jennifer, a Mom of a 2-year-old with XXXY and I were hosted by Elisha, a mom of a 2-year-old with Trisomy X. Elisha lives in the city where I grew up. Both Moms shared the wish that the support groups shared more triumphs and positive stories as well as answering questions when problems arose. With a toddler, you have so much ahead of you, so the hope the positive stories offer are greatly needed. So everyone reading this, please keep sharing positive photos and stories in our support groups.
AXYS Welcomes New Board Members
AXYS is thrilled to announce that three members have joined our board in June 2019: Stuart Howards, Andrea Millett and Bill Mulkern.
Stuart S. Howards, MD will serve as the AXYS treasurer. He is a professor emeritus at the University of Virginia Medical School and an active professor of Urology at Wake Forest School of Medicine. Dr. Howards has vast experience having served as a board member of the American Board of Urology and was their CEO for 15 years. He served as the treasurer for the American Society of Reproductive Medicine for 15 years. “I’m happy to serve as the AXYS treasurer, says Dr. Howards, “I want to assure our financial health and grow our funds so we can serve the X and Y community.”
Andrea Millett has a degree in psychology and has worked as a retail manager and preschool teacher. Andrea says “I have been involved in the AXYS community for about 10 years, watching it grow has been incredible. From being part of the ambassador team, to gaining knowledge from doctors and peers from the PCORI scientific conference, we’ve brought together similar minded people who continue to thrive for change. I want to assist in creating and achieving new goals for our future.”
Bill Mulkern is the current leader of the New England XXYs Support Group (NEXXYS), and a soon-to-be-retiree from the retirement plan law and administration field. Bill says “I want to take this opportunity to again thank Stefan Schwarz, who was generous and gracious in his support of me when I was diagnosed in early 2000. A few months after diagnosis, I attended my first meeting of the New England group he had founded, and it was then that I volunteered to become co-chair when he announced that he was leaving. And here I still am, 19 years later.”
Welcome Stuart, Andrea and Bill!
How AXYS accomplishes our mission: introducing the 2019 AXYS Committees
Much of the work AXYS does is handled by our committees.
Learn more about the people working to achieve our goals.
AXYS Clinic and Research Consortium Spotlight
Klinefelter and All XY Variations Program at the Children’s Hospital of Philadelphia
In 2015, the AXYS Board of Directors created the AXYS Clinic and Research Consortium (ACRC). This exciting development committed us to organize, fund and expand a consortium that operates as independent clinics which collaborate with one another, share informational resources, and explore opportunities to participate in joint research projects.
One goal of AXYS is to ensure that all families impacted by X and Y chromosome variations have access to the best available evaluation and treatments. The ACRC is an important means of achieving that goal.
In 2018 the Klinefelter and All XY Variations Program at the Children’s Hospital of Philadelphia (CHOP) joined the ACRC.
AXYS Awarded Grant to Develop Adult Specialty Clinics
On October 15, AXYS was notified by the WITH Foundation that it would receive funding to work collaboratively with the staffs of the AXYS Clinic & Research Consortium members at Children’s Hospital Colorado outside of Denver and Emory University Medical Center in Atlanta to help establish adult specialty clinics.
Exciting Leadership Changes to Support AXYS’s Goals
AXYS has a new and, for the first time ever, full-time Executive Director! After a multi-month recruitment and interview process, the AXYS Board of Directors was pleased to offer the position to Carol Meerschaert who began her new role on October 7.
Officials Make Birthday Dreams Come True
“Walp told NewsChannel 5 that Dayton has a rare genetic disorder called 48,XXXY syndrome and added he has also been diagnosed with autism.”
Extraordinary Care: Families have a place to turn for help with sex chromosome disorders
“Shy at first, Emma warms up quickly when Sharron Close, the pediatric nurse practitioner at the eXtraordinarY Clinic at Emory, notices the doll she’s holding.”
Dad to Cycle Over 200 Miles to Raise Awareness of Genetic Variation Which Affects His Son
Sheryl Kelly Joins AXYS Board
Parent and attorney Sheryl Kelly was recently voted onto the AXYS Board of Directors. Sheryl has already been very active in and supportive of the AXYS advocacy efforts and her more formal role will now only add to the knowledge and insight she brings to our mission. Sheryl and her family have also been financially supportive of AXYS and you can learn more about their most recent matching grant here.
Bregante Matching Grant Reached
Thanks to the generosity of the Bregante family, and our many generous donors, AXYS has matched the $5000 grant provided by the Bregante’s. This $10,000 will go a long way in helping us improve our informational and educational materials with an emphasis on services for adults. Learn more about the Bregantes here.
A Boy Named Matthew
Oconomowoc Teen’s Letter-writing Campaign Compels Governor
Alexis Rakowski of Oconomowoc, whose younger brother Jason has a chromosome variation known as 48 XXYY Syndrome, led a letter-writing campaign to get Gov. Scott Walker to recognize May as X & Y Chromosome Variation Awareness Month.
New Chromosome Clinic Offers Hope
Nemours launches a new program for kids with X and Y chromosome disorders.
News Story: Medical Advances Help Those with Klinefelter Syndrome
TWC News – 7/9/14