The Newsletter of the Norrie Disease Association
John Miller, President
**1 Message from The President
**2 Summary of Board Activity
**3 A Call for Membership
**4 Miracle Flight Info
**5 Member Spotlight
**1 Message from The President:
Hello, and welcome to the first edition of what is planned to be a quarterly newsletter, created for and shaped by you. I am your President, having neglected to introduce myself as such. I have served in this capacity for approximately a year and a half, and have been a part of the board as a member since November of 2009, after having been inspired by the first wonderful conference.
I have and continue to work with Rikki Chaplin (Vice President) Mark and Kasey Guzman (webmaster and Secretary respectively), Allison Marchalonis (Treasurer), and a bevy of others who attempt to generate ideas to make this organization more effective. We aim to do this by augmenting in-person conferences with webinars as well as other material that will also enhance our website, social media presence, and mailing list.
As a bit of a personal bio, I am a man with Norrie, from Charlotte, North Carolina. I have total blindness, significant hearing loss and other minor challenges. We have three other individuals with Norrie who serve on the board, as well as some parents of Norrie children, siblings, and those interested in researching the disorder. There could soon be room for you too!
I look forward to continuing as your president, as well as contributing through writing and responding to queries from parents as I have had the pleasure of doing over the years. Thank you, and let us know how we can do better.
**2 Summary of Board Activity
This section is intended to give you a brief overview of some of our most recent decisions and occurrences. I believe that members should have an idea of what is happening, so that they might help shape our positive outcomes.
The NDA is delighted to have the services of Mark Guzman, who is working to update the look and feel of our web portal, obviously one of the most important parts of our public-facing element. Many of the processes should soon be automated, making your life as a member easier, and freeing up our hard-working personnel to be more innovative.
2. Social Media:
We are contemplating how best to represent ourselves in this space. The Yahoo mailing list has existed for the longest time, and certainly remains useful. On Facebook, in addition to the NDA’s official page where announcements are made, we have a page created by an enterprising individual called the Norrie Support Group wherein persons, especially parents it seems, can ask questions, post pictures, even rant when needed. We are a little less certain about the utility of Twitter for the organization, and so are exploring other options that might allow for more accessible chat.
We are happy to have some exciting developments occurring both in hearing loss research and with other Norrie symptoms. It may soon even be possible for others to opt into research studies.
The Norrie Disease Association is financially stable, though we continue to welcome any support individuals can manage. Our biggest monetary needs arise when we are preparing for conferences, but some of the other endeavors that are in the pipeline will require funding as well.
**3 A Call for Membership
We as an organization exist for and are powered by our members. Member benefits are currently being enhanced, but they will include inside information that we hope will be of significant value to the Norrie community. The first edition of this newsletter is public, but future versions will be made available primarily to NDA members.
To join the organization, please visit our website: http://norriedisease.org/ and click “Join Us.” The fee is currently $15, and your presence will help us to expand the services we offer. The subsequent section is a good example of the linkages we hope to provide to the Norrie community.
4 Miracle Flight Information
Here at the NDA we’ve been in touch with Miracle Flights, a non-profit organization. This group offers flights, both domestic and international, to individuals in need of financial assistance to visit doctors and specialists for out of town procedures. Companions of the patient may also qualify for roundtrip tickets as well. There are restrictions based on annual income, however these restrictions can sometimes be overlooked if financial hardship can be proven.
We know that a few of our Norrie families travel to see certain specialists out of town and this organization may be able to help ease the financial hardship of travel. Miracle Flights also provides flights for service dogs and their owners to receive training or simply to retrieve the service dog. If you have any questions about all that this group has to offer you can contact Miracle Flights at www.miracleflights.org or call them directly at 702-261-0494 or toll free at 1-800-359-1711.
**5 Member Spotlight
In this section a different individual (be they a person with Norrie, family member, friend, or one with interest in the disorder) will be highlighted. I thought it appropriate to have our first spotlight introduce the current NDA Vice President: Rikki Chaplin. His words follow.
I was born totally blind and acquired hearing loss beginning in my mid 20’s. I now have a moderate to severe hearing impairment. My ability to speak and write has become more important to me as I have come to accept my hearing loss. I have worked as a professional musician, and I hold a Bachelor of Social Work from the university of Queensland, Australia. I still greatly enjoy music and hope to be able to work professionally again soon.
I am currently employed by Blind Citizens Australia as an Advocacy and Policy Officer. It is through this work that I have come to understand more about my purpose as a person with Norrie disease. My partner has two brothers with Norrie disease. they have the added challenges of intellectual impairment and autism, and cannot freely articulate what their wants or needs are, or when they feel uncomfortable, frustrated or are in pain. Through being involved in advocacy, and through coming to know my partner’s brothers, I have realized why it is that I was given the ability to speak and write as a person with norrie disease. My responsibility is to help people who cannot articulate what they experience to be understood by others who are in a position to ensure that their quality of life is the best it can possibly be. I feel privileged to have been given the gift of writing and speaking, so that my peers who cannot express themselves, are given a voice. We must never assume that because a person cannot communicate, and may not score well on a traditional IQ test, they have nothing of importance to say. I feel that as a person with the words, both written and aural, it is my responsibility to provide the voice that others are missing, so that they are heard, understood, and respected as people with equal rights and valuable perspectives to bring us.
In this section, we will solicit, display, and respond to feedback from our members. This is the first edition, so no feedback is forthcoming yet. Please submit your ideas and/or questions to email@example.com for consideration.
We of the Norrie Disease Association are saddened to report the loss of some significant members. Of course everyone is valued, but we especially wanted to pay tribute to these three individuals whose lives touched us all in some way. Other board members have assisted in writing these tributes, and will be credited at the end of each section.
It was with great sadness that we lost one of our former NDA board members. Mary Guevarra passed away in March, 2016. She had joined the yahoo group in 2000 and then joined the NDA Board shortly after its conception. She was an inspiration to our whole community with her words of wisdom, friendship and hard work for the Norrie Community. Mary came from a long line of men with ND: 2 uncles, 2 brothers, 5 cousins, 4 nephews and her dear son Ramon. Mary was born in the Philippines and lived in Las Vegas at the time of her death. She was involved with our community as much as she could up to the time of her passing. Mary helped to plan our 1st International conference in 2009. In the Philippines she taught grade school, high school and college students. When she came to the United States to seek better services for Ramon she taught Junior High School for 8 years. Then she worked with the National Accreditation Commission from 1997-2008. She was also the Program Director for the Visually Impaired Program in Harrisburg, Illinois. Mary also worked closely with the Bureau of the Blind and their grants programs for the elderly who were blind. Mary is dearly missed by the NDA and the many people whose lives she touched.
During the 2009 Conference, I had the distinguished honor and privilege of meeting a humble, yet witty man who possessed such a hysterical sense of humor that it was nearly impossible to resist the temptation of his contagious vibes. From Canada, Jack Markman provided ample advice and input relating to various topics that parents and those affected by the condition sought answers to including seizures, cochlear implants, hearing aids, and many more. Jack was determined to make an impact on society by whatever means necessary, and one of my favorite sayings that I will always cherish that Jack ended every post created was “fight the good fight.” Numerous times in my life I felt discouraged, but just reading that quote inspired me to continue in search of my niche and purpose. Unfortunately, with his death, the list died with him, though his legacy of never giving up serves as a constant reminder of what we as the Norrie Disease Association strive for: to promote and educate those impacted, to investigate potential cures by writing grants which usher in world renowned scientists, and to advocate for those who otherwise cannot speak for themselves.
Rafi Cohen was sixty, and had resided in Israel. His presence was instrumental during the last two conferences: one in person wherein he contributed useful questions that helped lead discussions regarding Norrie men and childbearing, and the other in which he participated in a cochlear implant panel via Skype. He had been married, with two daughters, and working as an IT specialist in his adopted home of Israel. His birthplace was Turkey, but he relocated as a teen-ager. He and his willingness to help anyone with needed information that he possessed will be missed.
–Rikki Chaplin and John Miller