Lennie cares to serve as KS&A’s Director of Scientific Communications Services because…

In KS&A’s Spring 2005 Newsletter, The Even Exchange, Lennie provided an explanation for her interest in X and Y chromosome aneupolidy, and described why she cares to serve as KS&A’s Director of Scientific Communications Services.  In this article, written shortly after her appointment, Lennie stated:

When you or your child was diagnosed with a sex chromosome aneuploidy (SCA), you may have searched the Internet, visited a medical library or reached out to a trusted health care professional among your friends.  You may have asked this friend to explain to you what X and Y chromosome aneuploidies were, or to unlock the door to health and medical research available only to professionals.  In late November 1999, a dear friend called to ask my help in finding information and treatment strategies for his unborn son with a prenatal diagnosis of 47,XXY.  He wanted to understand what he, his wife and family might expect.  I happily accepted the challenge. 

Perhaps my friend chose me because he remembered my involvement with a high-profile media case about a genetic disorder called osteogeneis imperfecta.  I had been serving as Chief Nurse for the Illinois Department of Child and Family Services and as a consultant on medical neglect or child death cases.  In this case, a child died of the consequences of his genetic illness while in the home of a non-relative caregiver.  Misinformation about osteogeneis imperfecta led to criminal charges against the caregiver, and her children being removed from their home.  I recommended that the caregiver’s children be returned, and told the court how a glaring lack of osteogeneis imperfecta knowledge drove wrong decisions.  Opposing lawyers said that I was “just a nurse,” implying I couldn’t know.  Yes, I was “just a nurse” - but a nurse who knew that lack of information or misinformation will lead to poor decision-making.  After a two-year absence, the children were returned to their parents.  Both the mother and I cried when this ordeal was finally over.

So when my friend first asked for my help concerning the prenatal diagnosis he and his wife had received, I cried.  I knew the obstacles and ongoing challenges that he and his family faced.  But I under-estimated his love, devotion and determination for his son.  Nothing would stand in his way to get the very best for his son.  Since then, I have discovered he is not unique; and that hundreds of other parents like him are members of KS&A - devoted and determined to help their child, no matter the obstacles.  They have inspired me.

My friend and I visited all the medical libraries in New York City, copying articles on Klinefelter syndrome and following the endocrine literature for treatment strategies.  Our findings were extremely limited, but our combined hope and faith kept us going. 

My inquiries to colleagues brought discouraging replies.  They only knew what was written in medical texts, and recalled what little they had learned in medical or nursing school.  Reaching out to pediatric specialists at the top nursing schools to find the Klinefelter syndrome expert, I found paternalistic attitudes and a limited view of what could be accomplished.  I was basically told nothing needed to be done until the child was a teenager and, even then, nothing would change the course of the condition.

While I reviewed articles and tracked referenced authors to find the thread conducive to healing, my friend searched the Internet for self-help groups and found KS&A. 

It was now January - two months later - and a baby boy was about to be born.  By this time, I was finding loads of information and reading everything I could find.  Two more months of research, and then I got to meet the baby.  He was beautiful!  He had an angelic face, a gentle disposition, ten fingers and toes, and lots of hair.  His father told me we still had to meet all of the baby’s needs, so I continued my research efforts on his behalf. 

Soon, my extensive findings, including research and articles from many different perspectives and disciplines, demanded cataloguing.  My sister is an MIS professional; and with her help, I created the Minds-On SCA Database.  Today, after 6 years of mining information and research, I have amassed well over 6,200 articles.  About half are full-text documents.  The database also contains a list of books geared to a lay audience, and that serves to improve health literacy for everyone and inform readers about the current work being conducted on the periphery of X and Y chromosome aneuploidy conditions, but that has great relevance to the subject.  I have been working to make the database accessible to the KS&A membership and look forward, as this website grows in features, to bring the database to each of you. 

To be honest, KS&A is uniting us all.

I chose the name Minds-On to suggest that it takes many minds, working with a single focus to address SCA, a partnership for wellness which must, I believe, exist if we are to remove the obstacles to the care and treatment of these complex conditions.  Minds-on is an analogy for hands-on and hearts-on.  The Minds-On Database blends the skepticism of a scientist, the passion of an advocate, the creativity of educators, health and medical practitioners, the devotion of a parent, and the demands of the adult population. 

My work in this area is just starting.  I continue to be inspired by adults and parents with X and Y chromosome variations, and love hearing the stories you tell and about your observations.  The time you take to help inform me in turn helps me to offer an even better informational database for everyone with, or dealing with, these conditions. 

I am loving being associated with you, and assisting KS&A to become the premier agency for these conditions.  In this way, I will fulfill my mission that began one day in November 1999.

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