NFADB Spring 2013 newsletter


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NFADB Spring 2013 newsletter

  1. 1. It is my honor to introduce myself to you as the new NFADB President. As a little background history, my husband Jake and I have an empty nest now since our three beautiful children are all grown up and living on their own in New York City. Our middle son Kenny is deaf-blind due to prematurity. After many rollercoaster years during his educational and academic life, he has now transitioned into a very productive adult and lives semi independently in his own apartment. Since Kenny was very young I was determined to learn as much as I could about deaf- blindness, so I volunteered in a school that had students with visual and hearing impairments and worked with families who spoke Spanish. That opportunity led to a fulltime job as the family specialist for the New York Deaf Blind Project. This is a position which I currently hold and have been in for more than two decades. In 1990 I was invited to join the Dream Team at the Helen Keller National Center (HKNC) where the idea of forming a national association for parents of children who are deaf blind was born. In 1992, t h e N a t i o n a l F a m i l y Association for Deaf-Blind was created with the support of the HKNC and Perkins School for the Blind. Since its creation, I have been an active participant as a board member, regional director, and special advisor as their International Liaison. Over the last two decades there have been times when family events and other challenges took priority in my life and did not allow me to be as involved as I would have liked to be, but my heart and actions have always supported the valuable mission of our dear association. We have been fortunate to have had great leaders in our Association and I thank our last President, Elisa Sanchez-Wilkinson – who stepped down to take care of personal and family issues – for her enthusiasm and energy during her term as president. We wish her all the best and hope s h e r e t u r n s t o collaborate with our initiatives when she can. NFADB is involved with major initiatives for 2013: Continued on page 2 From our President Spring/Summer 2013 Annual PPDB Helen Keller Award DBMAT 3 3 The Eyes Have It Michigan Assoc for DB 4-5 5-7 One Father’s Thoughts… 8-10 A Video Available iCanConnect 10 11 Here’s some news about NYPN Definition of Transition 12 13 11 Int’l CHARGE Syndrome Conference 14 Membership 15 Inside this Issue National Family Association For Deaf-Blind NFADB exists to empower the voices of families of individuals who are deaf-blind and to advocate for their unique needs. National Family Association for Deaf-Blind | 141 Middle Neck Road | Sands Point, NY 11050 Tel 800.255.0411 | Fax 516.883.9060 |
  2. 2. Page 2 THE NATIONAL FAMILY ASSOCIATION FOR DEAF-BLIND (NFADB) SUPPORTING PERSONS WHO ARE DEAF-BLIND AND THEIR FAMILIES. A non-profit national family organization established in 1994. The philosophy of the Association is that "Individuals who are deaf-blind are valued members of society and are entitled to the same opportunities and choices as other members of the community." NFADB EXECUTIVE COMMITTEE Clara Berg President Patti McGowan Secretary Cynthia Jackson-Glenn, OH Susan Green, PA Sheri Stanger, NY Pearl Veesart, CA (Member at Large) Lori Bookstaver, NY Administrative Assist. Edgenie Bellah Vice-President Paddi Davies Treasurer Blanche Stetler Affiliate Coordinator Cynthia.jackson- Board of Directors Special Advisors – Betsy McGinnity, Kathy McNulty, Nancy O’Donnell Newsletter Editor—Cynthia Jackson-Glenn Editorial/IT Support—Allison Burrows From Our President (continued)…. 1) Building awareness of deaf-blindness and the need for Individualized support services (interveners, interpreters and SSPs) for individuals; 2) Our board members participating at different levels with the NCDB’s team on the development of the Initiatives to develop the Intervener on line training modules and educational webinars series; 3) Building leadership skills among families so they can advocate for individualized support services and 4) Supporting individuals and families with resources, training and compassion as they journey through life with deaf-blindness. At this time I encourage all of you to get in touch with one of our board members to find out how you can contribute your skills and knowledge to NFADB in the hopes of continuing to provide support, connections and resources to the families who have a member who is deaf-blind. I truly appreciate the Executive Committee’s invitation to take over the Presidency of NFADB and I thank all of the board members for the vote of confidence they have invested in me. I will do my best to live up to everyone’s expectations. For more information, please contact NFADB at or feel free to send me a message ♥ Steve Perrault-NFADB International Liaison
  3. 3. National Family Association for Deaf -Blind Page 3 Annual PPDB Helen Keller Award Presented To Kathy McNulty The Pennsylvania Partnership for the Deafblind (PPDB), an organized network of parents, family members, and individuals with deafblindness, has awarded the 2012 Annual PPDB Helen Keller Award to Kathy McNulty, Associate Project Director, National Consortium on Deafblindness. This award is given in recognition of contributions made to the deafblind community. Kathy McNulty has worked for over 25 years on the national deaf-blind technical assistance project funded by the U.S. Office of Special Education. Based out of the Helen Keller National Center in Sands Point, NY, she is currently an Associate Project Director for the National Consortium on Deaf- Blindness (NCDB). During her career in deaf-blindness, Kathy has coordinated and provided a wide variety of technical assistance activities that focused on transition, person centered planning, systems intervention and interagency collaboration but, an on-going, major component of her job responsibilities has always been to design and deliver technical assistance that promotes family involvement and parent leadership. She has traveled to nearly every state in the country to either work with a small group of emerging parent advocates, present at a family weekend or conduct a strategic planning session with a state parent organization. She currently oversees all of NCDB's Family Engagement activities and, as a board advisor, works closely with the National Family Association for Deaf-Blind and the CHARGE Syndrome Foundation. We are truly grateful to Kathy for all her work on behalf of deafblind individuals! Pennsylvania Partnership for the Deafblind is a private, non-profit organization, which exists to provide support for individuals with deafblindness and their families through a family-driven network. If you would like more information regarding PPDB, or are interested in joining us, please contact Susan Shaffer, PPDB President, ♥ Deaf-blind Multihandicapped Association of Texas (DBMAT) has been busy watching the Texas Legislature. Specifically, there are 2 Bills in process that could change services that our loved ones who are deaf-blind receive. One is with regard to our waiver services possibly having the management and delivery method of services being changed to a “Managed Care” system. This could affect the level of ser- vices our loved ones get as a result of the change in service identification, but we have been given some reassurances. It is just hard to tell until everything is settled. Therefore we are trying to keep our presence known, so not to be forgotten. Another is with regard to Orientation and Mobility (“O&M”) services. We are currently having a calling tree set in place to call legislators in support of the needs for qualified O&M services. We have had a good response so far! So, we are staying attentive and being watchful to ensure our loved ones have the ser- vices they need! Best, Vivecca Hartman DBMAT Treasurer ♥
  4. 4. Page 4 The Eyes Have It by Cynthia Jackson-Glenn, MS I am sure that many of us have been confronted with visual language that we just don’t quite understand. I would like to clarify some of these terms: Clinical Low Vision Evaluation - A clinical evaluation to determine whether a person with low vision can benefit from optical devices, non-optical devices, or adaptive tech- niques to enhance visual function. Functional Vision Assessment - An assessment of an individual’s use of vision in a va- riety of tasks and settings, including measures of near and distance vision; visual fields; eye movements; and responses to specific environmental characteristics, such as light and color. Habilitation - The education and development of children and youths with congenital or early-onset visual impairments, including the teaching of compensatory and visual effi- ciency skills as well as daily living skills. Legal Blindness - Visual impairment in which distance visual acuity is 20/200 or less in the better eye, after best correction with glasses. Or visual field restriction (peripheral) is 20 degrees or less. Often used as a criterion for determining eligibility for benefits or ser- vices. Low Vision - A visual impairment, after correction, but with the potential for use of avail- able vision, with or without optical or non-optical devices and modifications, to perform daily tasks. Non-Optical Devices - Devices or modifications that do not involve optics, used to make visual information more accessible, such as book stands, trays, lighting, and large print. Interdisciplinary Team - Professionals from various disciplines who conduct and share the results of assessments and jointly plan instructional programs, such as IEP’s/IPE’s. Optometrist - A health care provider who specializes in refractive errors, examines and prescribes eyeglasses and contact lenses. Continued on page 5
  5. 5. Page 5National Family Association for Deaf -Blind The Eyes Have It (continued from page 4) Ophthalmologist - A physician who specializes in the medical and surgical care of the eyes and is qualified to prescribe ocular medications and to perform surgery on the eyes. Rehabilitation - The learning of skills with an impairment, including the relearning of voca- tional and daily living skills using adaptive equipment and techniques. Orientation and Mobility (O&M) Instructor A professional who specializes in teaching travel skills to visually impaired persons, including the use of a cane, dog guide, or sophisticated elec- tronic travel aids, as well as human guide techniques for safety. Rehabilitation Teacher - A professional trained to teach the compensatory and adaptive skills that enable a visually impaired person to live and function independently. Snellen Chart - The traditional eye chart whose top line consists of the letter E and which is used in routine eye examinations. Light projection - The ability to discern the source or direction of light, but not enough vision to identify objects, people, shapes, or movements. ♥ Michigan Association for DeafBlind (MADB) By Kelli Sabin, MADB Vice-President In February 15th and 16th 2013 we had the chance to go to Challenge Mountain with DB Central to attend the annual family ski event. For those of you who have attended this event in the past I am sure it was another absolutely awesome event. For those of you who have never attended be- fore, I hope that it was a life changing event that left you wanting to go back again and again. We have gone many, many times in the past and I never get tired of standing out on the mountain and watching the smiles on the faces of our kids as they get to experience racing down that mountain. The smiles of the volunteers who work with the kids are almost as bright and I have been told by many of them that there is no payment that matches seeing the life changing events that happen on that mountain. This time we got to experience our own life changing event and it still brings tears of joy to my eyes every time I think about it or get to view the awesome video taken by the Challenge Mountain staff and posted on their facebook page. We got to see Mariah, our 13 year old, who is deafblind with Mitochondrial disorder and multiple other issues; stand-up and ski down the mountain. Granted it required adapted equipment. However, it was still a sight that I never in my wildest imagination dreamed that I would get to see in this lifetime! We can hardly wait to go back and do it again. The folks at Challenge Mountain really and truly made a life changing event happen that day! This brings me to my next point, given the very unstable financial future of programs such Continued on page 6
  6. 6. Page 6 Michigan Association for DeafBlind (MADB) (Continued from page 5) as DB Central. We need to really focus on im- proving the strength and activism of Michigan Association For DeafBlind (MADB) and the National Family Association for Deaf- Blind (NFADB). On Friday February 15, 2013, we held an MADB membership meet- ing. We reviewed by-laws and ac- cepted nominations for the offices of President, Secre- tary and Communications Of- ficer. As I was preparing this information to be e-mailed out so that we could reach more of our families for nomina- tions; I discovered that we actually only have less than 23 --- YEP! You read that right, less than 23 actual reg- istered members. Folks we need to register our families, friends and profes- sionals as members. One of the most important lessons I learned when I sat on the board of the National Family Association for Deaf-Blind (NFADB) is that there is power in numbers. When we lobby or support groups that lobby the government for changes that help our family members we need to have numbers. When we write grants to fund different activities and events the numbers help. When we hold elec- tions or vote on various things the numbers help; they give us a bigger pot to draw from and they give us a fairer representation of what our families want or need for us to do. Larger num- bers mean more skills and brain power on our boards so that we never become stale, old or so set in our ways that we don’t change to meet the changing needs of the times. Variety comes with larger numbers and it is truly the spice of life. Please take a moment of your time and fill out the mem- bership application for MADB and NFADB which you will find in this news- letter or on-line at or There is no cost for the MADB member- ship and a very mini- mal one for NFADB. However, the pay back for what these organizations do for our families is price- less and we need them to help make sure that our families re- ceive the representation and services we all utilize. We need to have our numbers provide a better representation of people who care about our families members with this low- incidence disability. In addition to your imme- diate family members please reach out to your extended family members and the profession- als who work with your family member. Every- one of them has valuable input and skills that will help to strengthen our support group and everyone of them contributes to the numbers that give us power. Continued on page 7 Mariah Sabin and a Challenge Mountain, Boyne, MI volunteer skiing Feb. 16, 2013 The faster, the bumpier, the better as far as Mariah is concerned. Wrapped in a sleeping bag, even the cold does- n't keep her from skiing - - she loves it!
  7. 7. Page 7National Family Association for Deaf -Blind Mariah Sabin and Mike H. founder of Challenge Mountain, Boyne, MI as she ski's standing for the first time ever. Kelli and Mariah Sabin enjoying the hot tub in Petosky, MI the night before skiing Challenge Mountain, Boyne, MI Feb. 15, 2013 Mariah Sabin at Challenge Mountain, Boyne, MI Feb. 16, 2013. You can't buy smiles like this. Have a Blessed Day, Kelli Sabin, M.S. Vice President Michigan Association for DeafBlind 989-576-2202 cell ♥
  8. 8. Page 8 One Father's Thoughts on Making a Difference: My Life as a Dad, Husband, Firefighter, Teacher and ACTIVITIST A Contribution from Aiden's dad, Jamey McVicker Jamey attended the 2012 NFADB Symposium on Family Leadership. By that time, he was already well on his way to providing leadership to his state's Special Education Advisory Panel. Here is his story about why and how he became involved. It is very humbling and difficult for me to write an article in such a prestigious publication. I aim to share our family’s path and experiences, as well as my role as a dad, husband, firefighter, teacher, and activist. First, let me introduce myself and my family…My name is Jamey McVicker. My wife, Amy, and I were high school sweethearts and have been married 14 years now. We have 3 children; Aiden (11), Avery (8), and Addison (5). Aiden was born with bilateral anophthalmia (the absence of eyes) and has profound hearing loss bilaterally and other health and development issues. We live in Cameron, Missouri, a rural farming and bedroom community just north of Kansas City and east of St. Joseph. I am employed with the St. Joseph, Missouri Fire Department as a Fire Captain. Like every newly married couple, we had dreams of the perfect family, the perfect life. When our son was born, we were headed down that perfect avenue. My, how our lives have changed…and we wouldn’t have it any other way! Aiden has introduced us to a world we may not have seen, passionate people we may not have met. He embodies the values and characteristics that we hope to emulate. The time I have had with Aiden has helped me develop into a “Man” more than any other experience in my life. I owe it to him, and a strong faith, for making me the better person I am today. Living in a rural town, it is difficult to acquire the necessary resources to best serve Aiden and
  9. 9. Page 9National Family Association for Deaf -Blind his educational and medical needs. This past year, we as a family decided it would be best to educate Aiden at home. With the help of the Missouri Deafblind Project, we pursued a “future planning” approach. Our lesson plans are primarily life-skill based and incorporate community activities and social functions. The staff with the Missouri Deafblind Project witnessed our passion for the deaf-blind community and encouraged us to participate at the state level, advocating for this population. Thoughts and prayers were given to the idea of serving on the Missouri Special Education Advisory Panel, which advises and recommends policies, procedures, and practices for the Missouri Department of Education, concerning special education. It is comprised of individuals with a disability, parents of those individuals with a disability, educators, and administrators. I concluded to the fact that it would behoove our family, and others, to fill this need. I applied for this position and was appointed by the Commissioner of Education the next month. This position was outside of my comfort zone, but I was willing to step out for my child. I have never been one to put myself in the public spotlight. I do not have a master’s degree in education but I do have a passion for my child. The time requirements were minimal. The panel meets quarterly and the meetings run approximately 5 hours. Transportation and meals are also provided. Going into the first meeting, my stomach was in my throat because of anxiety and nerves. What can a firefighter bring to the table? Firefighters, and dads, fix things. It’s just what we do (with a manly grunt). We use our practicality, experience, innovation and our hands. Our family had been thrust into something I couldn’t fix. But, I felt I could play a role. I could “fix” the way people think about disabilities and help policymakers better meet the needs of children with disabilities. Much to my surprise, I found my niche quickly and took a leadership role on the panel. I do have a lot to offer and it is experience- based. No one knows what families need better than families do. My experience serving on Missouri’s Special Education Advisory Panel has been highly enlightening. I’ve learned about educational techniques, state and nationwide trends, and new, innovative adaptive equipment and technology. I’m now learning about new legislation coming down the pike. It is very rewarding to receive this knowledge and be able to provide a credible influence for children in our state - all because I was able to step out of my comfort zone. I would encourage anyone that has an interest to pursue a position on their state’s panel, and to do so whole-heartedly. Deaf-blind awareness-raising and legislation to benefit children who are deaf-blind need all the advocates they can get because of the low incidence of dual sensory loss. It is a very exciting time for deaf-blind education, particularly involving the development and recognition of interveners – individuals with special training in deaf-blindness who work with children who are deaf-blind and provide access to the environment, communication, and other people. We owe this progress to those activists who travelled this road before us. Now it is our turn to take the torch and run. If I had one wish for Aiden’s education, it would be to have had intervener services at an early age and continuing into adulthood. My hope for all individuals who are deaf-blind is to mimic Minnesota’s intervener programming inside the schools and within the community. The intervener role is on the verge of breaking out nationwide, and I hope we all share the same values as the Minnesota deaf-blind community leaders. Should you have questions, concerns or anxiety about (Continued on page 10)
  10. 10. Page 10 One Father’s Thoughts……(continued from page 9) playing a role for your State Special Education Advisory Panel, please do not hesitate to contact me. Wouldn’t it be amazing to have at least one representative for the deaf-blind community on every State Special Education Advisory Panel? Together, we can collaborate; share our experiences, successes and failures; and make great strides forward for future generations. Thank you for taking the time to read about my family and our experiences. I know we all have many trials and tribulations, but I wish to share our successes and smiles as well. Too many tears have been shed through the years. Many of them could have been prevented if only we had opportunities to collaborate on effective strategies, as well as learn from each others’ failures. I would also like to thank the NCDB and NFADB for allowing me this opportunity to share and hopefully motivate others. I have failed many times and in many different capacities in my life. I hope that I have learned from these times and they have made me grow to know what it takes to be a better dad, husband, firefighter, teacher, activist, student and son. I would like to share with you a thought of mine that I feel is very true to all life experiences, whether they be academics, athletics, or any other endeavor: “Only failure can leave the motivation to fuel the hard work that produces success. To have had success means to have known and understood failure.” Respectfully Yours, Jamey McVicker 127 East Evergreen Street Cameron, MO 64429 (816).632.6386 A Video Available At the end of February Monica Quesada (PR) and myself (NY) attended the Texas Symposium on Deaf-blindness in Austin TX. Not only did we enjoy a fantastic well-organized conference with great content and knowledgeable pre- senters, but we had the responsibility of conducting live interviews that were recorded to create a video. The purpose of these interviews with families who have a member who is deaf-blind is to produce a DVD that will help us create awareness about our population, advertise NFADB and build consciousness about the needs, challenges and success stories of a low incidence population. This video will be avail- able to anyone who intends to celebrate the Helen Keller month in June. We thank all the participants for their eloquence and openness to tell their stories, and we will do our best to capture a message that will represent our children performing at their best. We are excited to share this great DVD on Deaf-Blind awareness with all of you! ~ Submitted by Clara Berg ♥
  11. 11. Page 11National Family Association for Deaf -Blind ICANCONNECT.ORG The goal of the National Deaf-Blind Equipment Distribution Program (NDBEDP) is to ensure that every person with combined hearing and vision loss has access to modern telecommunication tools and the training necessary to use them, granting every individual the opportunity to interact with the world as an involved, contributing member of society. The program — promoted by iCanConnect — provides outreach, assessments, telecommunications technology and training free of charge to those who meet federal eligibility guidelines. For more information about the NDBEDP, including the Federal Communications Commission's (FCC) consumer guide and eligibility rules, visit PHONE: 800.825.4595 | TTY: 888.320.2656 ME RESOUR "When we do the best that we can, we never know what miracle is wrought in our life, or in the life of another." ~ Helen Keller Project Partners Creative Partner © Copyright 2012. iCanConnect - National Deaf-Blind Equipment Distribution Program
  12. 12. Here's some news about NYPN. NYPN is changing its name. Our Membership voted on changing our name and bylaws to improve our recognition. Our new name will be New York Parent Association for Deaf-Blind, NYPADB. Our website, will continue to operate and announce the news as we go through the process of registering with New York State and the IRS to maintain our 501(3)(c) status. The Fall/Winter edition of NYPN Newsletter arrived just in time for Spring! The featured article includes highlights of the iPad Deaf-Blind Workshop. The Newsletter can also be viewed online for families interested in this topic. NYPN's Board of Directors has been busy planning for our Family Picnic, a fundraising event at multiple Applebee's throughout New York State, and our Fall Conference. NYPN FAMILY PICNIC Sunday, June 2, 2013 (11:00 am– 3:00 pm) Queens County Farm Museum 73-50 Little Neck Parkway Floral Park, NY 11004 NYPN will advertise on NCDB and Family Connect as we get closer to the conference date. We will have a few rooms available in the HKNC Dormitory to accommodate overnight guests over the age of 16. Barbara Loughran, NYPN, President ♥ Page 12 NYPN Fall Conference Community Services for Deaf-Blind Saturday, November 2, 2013 (9:30 am - 4:00 pm) Helen Keller National Center 141 Middle Neck Road Sands Point, NY 11050 Featured Speaker: Debbie Fiderer Coordinator, Community Services Program at HKNC
  13. 13. Let me begin by saying, transition is a constant in our lives. It has become a buzzword in most of our children’s world. It is wrote into the Individualized Education Program, IEP. The Indi- viduals with Disabilities Education Act (IDEA 04) requires that in the first IEP that will be in effect when the student turns 16 years of age, the annual IEP must include a discussion about transition service needs (some states may mandate that the process start even earlier). Hannah Green’s transition started at age 14, on the IEP. In actuality, she has had many transitions throughout her education. She will be graduating in June. The next road she will venture down is college. Once again, I will be the nervous mom that I am but this time I will be sitting on the sidelines. This is MY biggest transition yet…She has become a young woman, an adult. Since she turned 18 in March, conversations with agencies, physicians and educators are directly with Hannah. She must give them permission to talk to me. This is just one more step towards the goal of independence. She is a self advocate. For her senior project she completed a simulation presentation to the 7th -8th grade classes. This was to bring awareness to them of indi- viduals with vision and hearing loss. The teachers were amazed with her final presentation. I am so proud of her and that she took the opportunity to educate other students and staff about deafblindness. So, as she walks across the stage to accept her diploma I will have many visions of the last 18 years. What a journey it has been so far! I, along with many others, will be watching to see what is in store for Hannah Green and her bright future! CONGRATULATIONS TO OUR 2013 GRADUATES! submitted by Susan Green ♥ Definition of TRANSITION: A passage from one state, stage, subject, or place to another Page 13National Family Association for Deaf -Blind
  14. 14. Page 14 We are less than 80 days away from conference! Both hotel and conference registrations are now open, and we encourage everyone to register as early as possible. The deadline for registration is June 15, 2013. Don’t forget to register siblings for sibshops, or if you have any performers in your home, for Conference Idol! All of the informa- tion regarding the program, camp, sibshops, Conference Idol, and more are available at the conference registration headquarters: SILENT AUCTION: Items are still needed for the silent auction. We have prepared a donation letter and form to help you with gathering and submitting items. For more info, contact Silent Auction Donation Letter Silent Auction Donor Form For more information about anything conference-related, please contact See you in Arizona! CONFERENCE SCHEDULE PROFESSIONAL DAY Thursday, July 25 Sessions 8:00—5:30 _________________________ CONFERENCE Thursday—Sunday July 25-28 Thursday Evening Reception 7:00—9:00 for Families & professionals Friday Sessions 9:00—5:00 Camp Program (full day) Exhibitor Fair Poster Presentations Interact at Info Central Idol Extravaganza Saturday Sessions 9:00—5:00 Camp Program (full day) Silent Auction: New Format CHARGE-A-Palooza Sunday Presentations 9:00—12:00 Camp Program (half day) Closing Breakfast and lunch included on Professional Day. Breakfast, lunch, dinner, and snacks in- cluded on Friday and Saturday. Breakfast included on Sunday.
  15. 15. “Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.” —-Helen Keller NFADB would like to thank all the families that have joined this association and continue to support, contribute, and inspire those around them. Below you will find information regarding the 2013 membership drive. To continue to receive up to date information regarding legislative issues, medical information, notices of upcoming events, families sharing information, and more, your membership needs to be current. NFADB is an outstanding association. Being a member brings each of us a sense of pride and satisfaction to know that we are working together to help our family members with deaf-blindness achieve success in their lives. THANK YOU! Page 15National Family Association for Deaf-Blind SUPPORT THE NFADB! MEMBERSHIP CATEGORIES (*U.S. FUNDS ONLY) REGULAR: any person who is deaf-blind, their parent, guardian, family member or professionals. ___ One Year: $15 ___ Three Years: $35 ___ Lifetime (Individual/family) $100 Regular members are eligible to serve on the NFADB Board of Directors. All members automatically receive our NFADB newsletter which is also available by request in BRAILLE, LARGE PRINT or electronically. Indicate preference on application. CONTRIBUTING SPONSORS: those involved by reason of monetary or other gifts of value to the Association. Contributing Sponsor - $______ Name: ________________________________ Organization:___________________________ Address:______________________________ City:_____________State: ______ Zip:______ Phone:(___)________FAX: ( )____________ E-mail: _______________________________ Information about person who is deaf-blind Name: _______________________________ Birthdate: _____________________________ Relationship to you: _____________________ Cause of deaf-blindness:_________________ _____________________________________ I give permission to share my name with other fami- lies whose children have similar etiologies or dis- abilities. __Yes __No I give permission to use my email address to sign me up for the NFADB listserv. __Yes __No Please return with check or money order payable to: "NFADB" at: NFADB/Membership 141 Middle Neck Road Sands Point, New York 11050-1299 or visit our website ( and use PayPal or a major credit card
  16. 16. Address 141 Middle Neck Road Sands Point, NY 11050 National Family Association for Deaf-Blind Phone: 800-255-0411 Fax: 516-883-9060 E-mail: Supporting Persons Who are Deaf-Blind And Their Families Non-profit Organization U.S. Postage Port Washington, NY Paid Permit 494 This newsletter supports “person first” language. All submitted articles will be edited accordingly. This publication is supported in part by the Helen Keller National Center, Sands Point, NY, and the Hilton/Perkins Program of Perkins School for the Blind, Watertown, MA. The Hilton/Perkins Program is funded by a grant from the Conrad N. Hilton Foundation of Reno, Nevada. Opinions expressed in the newsletter do not necessarily reflect the opinions of NFADB, HKNC or Hilton/Perkins. Newsletter is avail- able in braille, large print or electronically upon request. NFADB exists to empower the voices of families of individuals who are deaf-blind and advocate for their unique needs. ♥ Please address all correspondence to: NFADB Newsletter Editor Cynthia Jackson-Glenn 141 Middle Neck Road, Sands Point, NY 11050-1299. Voice/TTY: (8:00 a.m.-3:45 p.m., EST) 800-255-0411; Fax: 516-883-9060; E-mail: