MAJOR ANNOUNCEMENT!

 

MAJOR ANNOUNCEMENT

XXYY Project is moving under the AXYS umbrella!

The XXYY Project board is proud to announce that we will become a project of AXYS as of February 28, 2015. AXYS is an umbrella organization for all X and Y chromosome variations. The move reunites the XXYY community with the rest of the x & y chromosome community, in order to strengthen our united visions for enhanced research and attention on all x & y chromosome variations.

As you know, XXYY Project founders started our project in order to focus heavily on finding our families and facilitating XXYY specific research and support. We did this because we knew that XXYY was different and needed a focused effort that only XXYY families could provide. The XXYY Family has accomplished a great deal and now is the right time to bring “Team XXYY” back home to AXYS.

What does this mean to you? From the perspective of our families, you will see little change.

  • We will keep our identity as XXYY Project but our resources will be connected to AXYS. For the time being, we will maintain our Facebook page, Twitter page, Web site, Listserv, XXYY library, and Family Outreach phone line.
  • At least one XXYY representative will serve on AXYS’ board. Larry Rakowski, current XXYY Project board member, will be the first XXYY representative to serve.
  • Maureen Miller and Fran Braun will be working closely with AXYS for the conference in Baltimore. Vi Batthish will stay on to maintain the Library for the upcoming year. Maureen will also be available to talk to families about creating smaller geographical groups. Thanks so much to Larry,Vi, Fran and Maureen!
  • XXYY Project will participate in AXYS’ conference, which is held every other year. AXYS will also need and utilize XXYY representative volunteers (you) to help with the conferences. We could decide to hold our own symposiums in alternate years, if there is adequate volunteer support.
  • Donations for XXYY Project will be sent to AXYS. Money will be set aside to assist XXYY families applying for Clinic Grants. If you wish to designate your donations specifically for XXYY, all you need to do is note that on your donation. We also hope that you will support AXYS itself, since they will be providing considerable and ongoing support to our community.
  • You will receive mail from AXYS.   Some may be specific to XXYY Project but most will be general in nature. It will be important to pay attention to mail and email from AXYS. You will no longer receive correspondence from XXYY Project directly, as we will be part of AXYS.

The XXYY Family is going to work hard to make sure that XXYY does not disappear into a larger pool of people with x & y chromosome variations in this move. Board members are moving over to work with AXYS and you are encouraged to speak up and be a part of this process. We hope that the XXYY Family will support AXYS wholeheartedly to further all of our goals.

Sadly, our move also means that our Executive Director, Linda Prudhomme, will not be staying with us because AXYS already has an Executive Director. Linda has done such an amazing job for the XXYY Project over the years.   We appreciate her and her extraordinary kindness toward us and our guys. We will be posting a farewell blog to her on our Blogsite. Make sure you say your goodbyes in a comment. She will really be missed because she became one of the gang at the XXYY Project.

The XXYY Project board considered this move very carefully over the last several months. In depth conversations led to the decision to reunite with AXYS.   We are bringing close to 400 XXYY families to AXYS. We are so proud of our work. This move is good for all of us. AXYS has so much to offer us and we have so much to offer them.

Thank you, AXYS, for inviting XXYY Project to join you. We can’t wait to see what happens next.

If you have any questions please emails us or comment below.

Visit AXYS at www.genetic.org 

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Family Support Manager Changes

Change is good, so they say.

It was very exciting to get our new toll free number (844-XXYY-GUY),  but it saddens me to let everyone know that our Family Support Manager of many years Melanie Meyers has retired from her volunteer position.

Melanie was just “one of those people”, and I know her kindness, patience (something I do not have very much of) and understanding helped many parents on their start of  their XXYY journey.  I’m sure there will be lots of parents who will pipe in on this entry and thank Melanie for all she has done.

I am also proud to let you know that stepping into the Family Support Manager volunteer position is Lori Morlan, who is also “one of those people”.  Please be sure to check out contact page for details on how to contact Lori (and hours available).  Lori, welcome, and I am certain everyone will appreciate all your efforts.

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Day 48: Walk with me

In the many years I have been involved with the XXYY Project, there have been many people I have met who make a difference. People who are always looking to make things happen.

Charlene is one of those people.

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Aside from being a great and fun lady (this pic is one she posed for my at-the-time 4 year old Oscar), she is creative, and funny and she is the one who made Walk in My Shoes something we can all be proud of.

 

Over the last 5 years, the walk has raised more than $25,000 for the XXYY Project and helps all families affected by XXYY Syndrome.  But really it does more than that.

Every family who asks for a donation, spreads the word about XXYY.  Every person who joins, gives that family, and all the other families, a feeling of belonging, of understanding.  And that is a feeling we do not take for granted.

Charlene did an amazing job as Walk Coordinator, but is now retiring from these duties.  The XXYY Project would like to thank Charlene for her incredible contribution.  If you would like to make a difference and join the XXYY Project family as Walk Coordinator, please email me for more details.

I am personally so grateful to Charlene for the walk.  It has done amazing things for my son.  His school participated last year, and this year they have been asking “when is the walk”.  That feeling of “omg people care!” is completely overwhelming, and amazing.  So even though today is the last day of celebration, I have pledged to blog here weekly on my progress organizing our Walk a Mile In My Shoes adventure, and hope to see you all tune in and perhaps be inspired, like I was by Charlene, to Walk a Mile in My Shoes.

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Day 47: Make a difference

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Sometimes its just so hard.

Therapists, doctor appointments, psychologists. Homework, therapy, medications.  When does a kid get to be a kid? When can I (mom) start to relax? Denial is the biggest enemy – but sometimes I want to just forget all about XXYY syndrome.  But then I get curious and I want to figure out, who is Jacques?  But its just so hard.  I talk to him, and I talk, over and over.  I wonder, does any of it get in there?

Punishments don’t work. Incentives don’t work.  There must be something that works!  All I know, is that doing nothing is the wrong thing, and so everything else must make a difference.

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Day 46: Happy Smiley People


When my son was diagnosed with XXYY some 22 years ago, I was handed what little medical literature there was in existance.  Our geneticist told us he “searched the entire world” for information.  I still have those papers today and whenever I look at them, I feel overwhelming sadness.  They look like redacted FBI files.  There are photos of brave boys and men with XXYY in those papers.  They are standing in a stark room, naked, with their eyes blacked out to protect their identities and with black marks over their private parts.  What is written about them are, well, the saddest stories you ever heard.  The information in them is so biased toward their worst difficulites, with absolutely no information about the better, more joyful parts of their lives and abilities.

I think about them a lot.  I think about how very much I appreciate that they were willing to stand there and have those photos taken.  I think about the heartbreak of their parents, who must have had an even more horrifying reaction to their photos in those papers.  Some of those photos are from the 1960’s and 70’s.  Without them, nobody would have known anything about XXYY. I am grateful to those individuals and their families.  And at the same time, my heart breaks for them. I often wonder if they know that they had an
enormous impact on our lives and the lives of every boy and man with XXYY who came after them.

Dr. Nicole Tartaglia worked with the XXYY Project to conduct the first-ever study on a large group of boys and men with XXYY.  The paper was published in 2008.  When I first opened it, the very first thing I noticed was the page of happy smiley people in the paper, including my son.  I studied their faces, before ever reading the paper.  I thought to myself, wow, from now and for the next many years to come, other parents like me are going to open this paper and say, “Look at how happy these guys are!”  No more redacted
FBI files.  No more stark rooms.  No more “saddest stories ever”.  No more papers that tell us to “institutionalize” them.  No more prison studies.  No more pain and suffering for parents and affected individuals, just because they looked at a piece of paper that was supposed to be about them, and yet was not.

I am unbelievably grateful to my XXYY community for participating in Dr. Tartaglia’s research and putting their sons’ happy smiley faces in that paper.  Fifty years from now, some guy with XXYY will instead say, “Wow, he looks like me!  Is that my brother?”  And his parents will say, just like I have, “Thank you to all you families from the year 2008 for giving me hope and a lot of smiles in the year 2058.”

I know that because of that paper, many more papers will be written about XXYY.  I sure hope they have happy smiley faces in them, too.

 

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