TGen Clinic

The new (and first) Clinic for Rare Childhood Disease is opening this summer right in our back yard here in Arizona.  This is yet another amazing milestone for our rare disease community as TGgen is teaming up with Dr. Narrayan to provide a place for patients and their families to turn when they feel exhausted … like they need options and answers. 

Clinic for Rare Childhood Disorders

3330 North 2nd Street, Suite 402

Phoenix, AZ 85012

This clinic is sponsored by TGen and will service children with neurological disorders interested in not only the possibilities of genome sequencing, but will have hands on care and a place to turn where doctors and nurses will treat your child as the individual they are, not as a label.  It will also serve as an amazing place to compare symptoms of individual children with data they are finding on paper, as we all know together they are much more powerful than one without the other.  This is truly a BIG milestone for the rare disease children and families in our community.  For those of you who do not know the great Dr. Narayanan … let me take a moment to introduce him now.    

DR.N

Dr. N is a pediatric neurologist,  Co-Director, Pediatric Neurogenetics Center, Director, Neurofibromatosis Clinics and Director, Developmental Neurogenetics Lab.  Dr. Narayanan obtained his BS in Physics, MA in Physics and his MD.  He completed his residency in pediatrics at the Johns Hopkins Hospitals and served as resident in Neurology and Child Neurology at Barnes Hospital and St. Louis Children’s Hospital. After completing his residency, returned as a research fellow and faculty member, working in the laboratory studying the expression and regulation of the peripheral myelin P2 protein gene. He joined the Child Neurology division at the Children’s Hospital of Pittsburgh in 1990, where he remained until 2003 as Associate Professor of Pediatrics and Neurology. In 2003, Dr. Narayanan moved to Phoenix as a member of the Child Neurology division at Barrow Neurological Institute.  He is certified by the American Board of Pediatrics and the American Board of Psychiatry and Neurology (with special competence in Child Neurology). He received the Young Investigator Award from the Child Neurology Society and he serves on the Scientific Selection Committee of the Child Neurology Society, and the Curriculum Committee of the University of Arizona, College of Medicine.  Dr. N has a special interest in the genetic basis of neurological disorders. In collaboration with other doctors he has established the CHC-BNI-TGen Pediatric Neurogenetics Center. His research interests include the neurobiology of genetic disorders, cell adhesion molecules and synapse formation. He is engaged in a number of active research projects and has published extensively in the neuroscience literature as well as been recognized for many awards.

 Although his laundry list of degrees and recognitions is beyond impressive … All of those statics say nothing about the character of this man.  He will answer the phone himself late into the evenings, pass out his cell phone number, spend hours with a family because time and policies to not interest him, only the quality of care does.  He is a doctor who is less interested in the paycheck and more interested in YOUR child.  A man who looks for options for children when other doctors say that there are none.  A man who believes in the power of your child as an individual and will stand behind your family and your decisions.  He is a man who leave no stone unturned. 

Wylder and our family first met Dr. N at the Barrow Neurological Institute in spring of 2011.  That day he offered us a glimmer of hope by opening up his office to us, to simply listen. He has forever made an impression on our hearts and we felt we were being herd.   Dr. N’s greatest wish for this Upcoming Center for Rare Childhood Disease is that it comes together by and for this community he loves so much.  He wants it to serve any children battling rare disease, underprivileged or not. 

TGen has asked me to help with the design of this new Center for Rare Childhood Disease and I have gladly hopped on board.  We have already made HUGE strides these last few months and the contractors are almost finishes with the shell of the space (carpet is in, walls are painted etc).  That will give us July to come together as a community and make this space cozy and welcoming for children and their families in our community.  So here is how you can get involved and help this AMAZING Center come to life; 

We are looking for volunteers to help us paint some decorative walls in the exam rooms on July 13th and 14th.  (stripes, dots, stars etc)

polka dot starwall stripewall

We are also looking for those of you who consider yourselves “the crafty type” to help us from home by making tissue puffs, stars, fabric flags, and pinwheels so kids like Wylder can have beautiful things to look at on the ceilings.  

kites puffs flags

Any gently used wipe-able toys and books to make the lobby very kid friendly would be very much appreciated. If your little ones have out grown their toy trucks and blocks, please send them our way.  TGen has also created this WISH LIST of items avaible for purchase for the lobby;

TGen C4RCD new clinic Amazon wish list PRINT 13-0217

Lastly, in the lobby we are creating a wall with hand painted tiles as art.  These will be hand made by many of this kids that see or will see Dr. D and we would love for any and all to join in on the fun.  Steven and I will of course be making one from sweet wylder and we ask that you all consider doing the same loved kiddos in our NPD family. This projeect will be taking place on the 17th-the 21st. 

TGEN

PLEASE MESSAGE ME ON FB OR EMAIL ME AT SHANNON@WYLDERNATION.ORG if you are intersted in helping with any of the above project! 

I know I have loaded you with information on this blog, but it is all really excited and I have been waiting to share it with you.  We hope to have the space ready for our Rare Disease Kiddos this August!!!

As I get to work on this space with TGen I cannot help but constantly think of you Wylder.  Would you like this, or that … we better put something on the ceiling for all those in Wizards here … is this to over stimulating … etc.  I continue to believe that all things are possible because of you and I thank you for opening my eyes to what I may not have understood as completely without you.  I love and miss you littlest one. 

This space will be just wonderful as it will come together out of love by a community that together is not alone.  xoox

Comments

  1. Cathy Johnson says:

    Shannon!!!! This an absolutely AWESOME project. Your post actually made me teary thinking of what this Clinic will actually mean to those who will be using its services. Our family will DEFINITELY be participating in getting things ready for the kiddos. Thank you so much for sharing this tremendous opportunity. Wylder Nation Michigan is on board! xoxoxo

  2. WylderNation NY reporting for duty!! Shannon and Steven, this is so exciting and, like Cathy, I’m teary-eyed envisioning how amazing this will be…..Mr. Littles continues to spread the hope and love and his legacy just sparkles no matter where we turn. I’m a quilter, crocheter and knitter…..craft is my middle name, lol!!! I will email you so you can give me some ideas and specifics as to what you’d like. xoxoxoxox

    • I cannot wait to see what you (aka WN NY) craft up!!!! Thank kiddos are going to be thrilled. Thank you Leslie … This really is going to be an amazing space for so many kiddos. Xoxo

  3. This just brought tears of joy to my eyes. What an AMAZING gift Dr. Narrayan is offering – the most important one, the gift of HOPE!! He sounds amazing. We’d love to help out in any way we can. I am not crafty lol but we’ll get some stuff together from here and the Amazon wishlist to send out. Will they be doing research as well or just clinical? You and Steven are so incredibly dedicated – all of our children are better off for it. xoxoxo

    • Mommy and Daddy says:

      It really is amazing Eileen, for families just like yours and mine. It is such a reminder that there is goodness and amazing people that want to help our children and give HOPE. We appreciate youe help so much, every little bit helps! The clinic will servei both research and cinincal assessment, most of the research will fall under the TGEN umbrella. Sending our love to your whole family. xoxo S

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