National Family Association for DeafBlind News

The Fall Report from The President

Sun, 01 Sep 2024 14:10:45 GMT

September 1, 2024

Dear NFADB Members,

As September begins, I begin my final month as president of the National Family Association for DeafBlind (NFADB). My term as president ends on September 30, and I have made the difficult decision to also step off the NFADB Board. I will, however, continue to volunteer as a general lifetime member and I invite all of you to do the same.

I would like to take this opportunity to thank all of you, our incredible members, for your ongoing support and engagement and your personal kindness to me. I also wish to thank the current board for their efforts and good work on behalf of this association. During my many board terms, I have had the privilege and pleasure to work with four presidents and executive committees, wonderful fellow board members from across the nation, and caring and supportive special advisors. I have learned from each one of them. I have witnessed the growth and engagement of our membership and am so proud to have been a part of this board and network.

I will forever love NFADB! NFADB is inclusive of all families, regardless of the age, abilities, or the cause of deafblindness of their family member who is DeafBlind. Its mission is to empower the voices of families with individuals who are DeafBlind and advocate for their unique needs. Because of these things, I have believed in NFADB from the start.

You may wonder how I became so involved with this national association. Well, like many of you, I learned about NFADB from my state deafblind project. In the early spring of 2000, our son was diagnosed as deafblind when he was five years old. I was in a bit of shock to say the least after being told that he would eventually go totally blind and there was a possibility that he would continue to lose more hearing. That summer, I attended my first deafblind family learning conference hosted by my state deafblind project, and NFADB was an exhibitor. I stopped by their booth, joined as a member, and was given a mug that I still have to this day. I really did not know too much about NFADB at that time, beyond its mission, but I was desperate to seek deafblind information and meet other families that unconditionally understood my heartache and determination to do right by my child.

My connection with NFADB grew and as I began to feel a part of the NFADB community, I applied for a board position in 2009, began my board service in 2010, became secretary in 2012, and president in 2018. It has been a beautiful journey of learning, friendships, and growth.

And just like all of you who have become a part of the deafblind community as members of NFADB, where you have met other families and interested professionals, it feels right. You have a connection and a bond that you know you will have for a lifetime. I do not have to explain that feeling. As families we just know. We support, we share, we celebrate, and we grieve together. We are a network. The networking opportunities are endless, the information gained is lifelong, and the friendships are priceless and forever.

It is now my pleasure to introduce to the membership Donia Shirley (VT) as NFADB’s president elect. I have had the honor of working with Donia in her roles as secretary and vice president of NFADB and am excited for her now to take the position of president. NFADB also welcomes four new board members to the team: Renee Engle (SC), Monica Fernández (VA), Sharren Foster (MA), and Heather Snyder (PA). I congratulate them all as they join NFADB’s caring, hardworking board of directors.

Stepping off the NFADB board is Myrna Medina (CA). We wish to thank Myrna for her extraordinary leadership and contributions to the board, membership, and association. Myrna has been such an asset to NFADB, and we greatly appreciate her service.

Change always brings elements of the unknown and chaos before the calm, but it can be so positive for future endeavors. Fortunately, we learn to embrace change and all the benefits it offers. So, I have one final request to both the board and the general members, to please continue your journey of both personal and professional development and continue to pave the way for other families who are walking the journey behind you. As we know, this work is much greater than oneself.

As NFADB announced at our annual general membership meeting in July, we have created and put into place three new goals:
· NFADB will be recognized as a national resource supporting families of individuals who are DeafBlind across the lifespan.
· NFADB will advocate for and with families on a national level.
· NFADB will operate with a sustainable financial plan.
Our hope is that our NFADB board work under these three new goals will:
· Improve communication: When board members are working together towards a shared goal, we are more likely to communicate better and reach agreements.
· Improve collaboration: We as a board are more likely to coordinate better and share knowledge because we have a common aim.
· Increase efficiency: We are a board of volunteers and alignment can help eliminate wasted time and resources by avoiding duplicate efforts.

We invite our members to support, engage, and or volunteer with the board to help us meet these new goals.

As I close my final president report with much gratitude, I’m reminded of the quote that “work is love made visible,” and that is a true testament to what it means to be a member of NFADB. The tireless members, volunteers, board members, families, individuals, and professionals who make up our community work together because they love what they create. Sometimes that love is displayed as you attend meetings, forums, and presentations, or support a project or a task, but oftentimes it is what is not shown that embodies what love through service looks like. I sincerely thank you all!

Best always,

Patti McGowan, NFADB President

The Spring Report from the President

Jacqueline — Mon, 04 Mar 2024 14:42:14 GMT

March 2024, Spring President’s Report:

Greetings NFADB members and friends,

Here we are at the last month of the first quarter of the new year and my hope is that everyone’s year is off to a great start. This is NFADB’s 30^th anniversary year, and our association continues to empower success for families of the DeafBlind community. Being a true Pennsylvanian, I am keeping the belief that the world-famous groundhog, Punxsutawney Phil, located at Gobblers Knob in Punxsutawney, Pennsylvania, is right on with his prediction of an early spring. Here is to hope!

As many of you know, for the past three years NFADB, national and state family deafblind organizations, and individual family members have been receiving training and education on legislative advocacy and are preparing for the 2^nd DeafBlind Day on the Hill, April 16-18. Together, as one voice, we are the Family Advocacy Coalition Educating (FACE) for DeafBlind. I certainly understand that legislative advocacy is not everyone’s forte, but there are many ways to be involved and we do need your voice! We invite you to join us in person in Washington, DC, or virtually. If this is unrealistic, writing a letter, making a phone call, or joining our social media campaign, can make a difference. An easy way to contribute is to share our social media posts. Need a template or support in finding your state’s legislators or representatives? Maybe you just need a 1:1 conversation. No worries, NFADB has you covered. Feel free to reach out to our Policy, Information, and Education (PIE) Committee lead, Jacqueline Izaguirre Jacqueline@nfadb.org.

In April, NFADB’s Nomination Committee will be putting out its annual (2024-2025) Call for Nominations. We will have open executive and general board positions. NFADB bylaws allow for an individual to serve in a board position for three consecutive 2-year terms. We encourage members to express interest in joining our board via self-nomination or to nominate an individual of your choice. If you are interested or have any questions, please reach out to our Nomination Chair, Edgenie Bellah, Edgenie@nfadb.org.

The NFADB Board, along with our NFADB Special Advisors, have been diligently working since January to update NFADB’s long-term goals. The last time NFADB’s goals were updated and implemented was in 2018-19. The current board recognizes that long-term planning is key to bridging the gap between where NFADB is and where we wish to go. Our special advisors have facilitated our strategic planning work, with effective techniques for designing meaningful goals and implementing effective plans to take NFADB down the road to the future. Updated goals will provide clear direction, help us focus on what matters most, increase our motivation, and move us forward with a sense of purpose and direction. All this work on behalf of NFADB is aligned with our beliefs and mission and will allow us room to grow and adjust as internal and external conditions shift.

Interested in learning more? We will share all this and more with our membership at our upcoming annual General Membership Meeting on Tuesday, July 9, 2024, @7p.m. Eastern. Please SAVE THE DATE! More information will be forthcoming.

I would like to take this opportunity and close by thanking the NFADB Board and NFADB members for your ongoing commitment and support.

Wishing you a wonderful (hopefully early) Spring!

Kind Regards,

Patti McGowan, NFADB President

The Fall Report from the President

Jacqueline — Sun, 01 Oct 2023 10:00:00 GMT

President’s Report

October 1, 2023

Fall Greetings NFADB Members!

With the fall season underway, I wish to share that NFADB is celebrating its 30^th anniversary beginning today. It’s amazing to realize that for 30 years, countless families and professionals have been part of this national organization that serves all families with individuals who are deafblind regardless of age, ability, etiology, or cause. It is a milestone to be shared with pride. As our new tagline will say: “Empowering Success for Families of the DeafBlind Community!” This is just the beginning as we look forward to the next 30 years.

NFADB is in the process of a legal name change to remove the hyphen from DeafBlind. The field has evolved and there is now broad consensus for the use of the term “deafblind,” including among deafblind adults and families of children who are deafblind. Individuals who are deafblind have distinct needs that are not represented by linking the terms “deaf” and “blind” with a hyphen. The combination of both results in a highly diverse population with a variety of complex needs who require specialized supports. Removing the hyphen recognizes this unique population.

And just as the colors change during this beautiful fall season, you will begin to see a new color scheme with our updated NFADB logo and branding. The logo has a hand in black ink making an “I Love You” sign in ASL, inside a square of yellow and lime green. Four black dots on top of each finger represent a family, signifying that NFADB is a family organization. In white text on a black background, the logo also says, “National Family Association for DeafBlind” and “Empowering Success for Families of the DeafBlind Community.”

I took advantage of reading about 30-year anniversaries and learned that the 30^th is known as the Pearl Anniversary. Pearls are the ultimate symbol for wisdom, valued for their calming effects, and represent serenity. They are long-lasting and solid, signifying a strong bond. I cannot think of a better way to describe our NFADB families and members. As a parent to a child who is deafblind and now an adult, I have learned so much from other parents, family members, and professionals who shared their pearls of wisdom with me. I will forever be grateful to them.

As we begin our 30^th year, NFADB welcomes and congratulates four new board of directors. They are Gordon Boe (PA), JC Dollar (MO), Nancy Giurato (NC), and Lissa Elkins (TN). We also wish to thank the following board members who stepped down on September 30, 2023, for their time, volunteer commitment, service, and support to NFADB and its members: Mary Gyori (VT), Melanie Knapp (TX), Sarah Steele (TX), and Rebecca Cowan-Story (GA).

NFADB congratulates our two Steve Perrault Family 2023 Award recipients, Vivecca Hartman (TX) and Sheri Stanger (NY). Each year, through its Steve Perreault Award, NFADB recognizes a family member or professional who has created a lasting and profound impact on quality of life for individuals who are deafblind and their families. Information for our 2024 Steve Perrault Professional Award will be coming soon.

Thank you to the many members who joined our NFADB Ambassador training on September 21. Having NFADB Ambassadors across the country helps to further our mission of empowering and supporting families of individuals who are deafblind to advocate for their unique needs. If you are interested to learn more or become an NFADB Ambassador, contact donia@nfadb.org and nilam@nfadb.org.

And speaking of advocacy, our Family Advocacy Training and Education (FATE) program is launching its 3^rd year beginning October 5, 2023. The FATE training is open to family members and or family organization representatives who wish to enhance their leadership skills to advocate on issues important to the deafblind field and community. Family members use these skills to educate legislators on the needs of individuals who are deafblind and their families. For more information contact jacqueline@nfadb.org.

Lastly, we hope that you will join us for our 4^th annual fundraising DeafBlind Awareness Event. It will be held virtually on October 19th, 2023, at 7:30 pm EST. This impactful event will feature the screening of the documentary “Unseen,” focusing on the theme of caregiver fatigue. The event's hashtag, #NFADBCares, reflects our commitment to raising awareness of the challenges faced by families and caregivers of the DeafBlind community, and how NFADB’s mission is to support them. Please register here: https://www.nfadb.org/event-5348736 and view the Unseen Documentary Trailer. If you have questions, contact ricky@nfadb.org.

As always, allow me to thank every member of NFADB for your ongoing support to this association. Together, we look now to build on the significant momentum of the previous 30 years as we continue to push forward as champions of our beloved deafblind community. We can anticipate better to come, more successes, and more reasons to celebrate.

Best Regards,

Patti McGowan, NFADB President

The Spring Report from the President

Jacqueline — Mon, 20 Mar 2023 09:00:00 GMT

Spring 2023

Hello NFADB Members!

Happy Spring to you and your family. On behalf of the National Family Association for Deaf-Blind (NFADB), we thank you for your ongoing support and engagement. Spring is certainly in the air, the season during which the natural world revives and reinvigorates after the cold winter months. This is the reality of NFADB, not only following winter but also what seems like a renewal and awakening after several years of Covid.

NFADB board members have just returned from two in-person events. It was so wonderful to see families and our deafblind community once again! It was the rejuvenation we have been looking forward to for so long.

At the end of February, we attended the 2023 Texas Symposium on Deafblind Education in Austin, where we joined families and professionals from Texas and across the country. NFADB was an exhibitor, and the co-leads of our Policy, Information, and Education (PIE) Committee, Jacqueline Izaguirre and Melanie Knapp, gave a presentation called “Stronger Together: One Family Voice.” It covered details of NFADB’s exciting advocacy training for families and the new National Advocacy Agenda developed by eleven family organizations in 2021 following the training pilot program. They also spoke about a newly formed coalition, Family Advocacy Coalition Educating (FACE) for Deaf-Blind, and the plans for the first “Day on the Hill for Deaf-Blind” scheduled for April 19. I had the honor of sharing updates on national issues and resources in deafblind education as part of a “state of the nation” address. As always, the Texas Deafblind Outreach team knocked it out of the park with their Symposium on Deafblind Education

Following the Texas Symposium, NFADB attended the 2023 Deaf-Blind Summit: “Reset, Rebuild, Recharge” in Cincinnati, Ohio. This annual event, is put on by the National Center on Deaf-Blindness for state deaf-blind project personnel funded by the U.S. Department of Education's Office of Special Education Programs. This was a wonderful opportunity for NFADB to present an overview of our association for new state deafblind project staff and share the “Stronger Together: One Family Voice presentation. NFADB exists to empower the voices of families with individuals who are deafblind and advocate for their unique needs. Our partnership with our state deafblind projects is crucial to this mission to ensure that families in their states are connected to the knowledge and skills needed to navigate services for their child and to connect them to other families in the deafblind community.

The following are updates from NFADB’s advisory board committees and work groups. Remember any general member can join and volunteer for these groups. We need you!

Adult Life Committee. Our Adult Life Committee continues to work on the need for information, resources, and support related to adult life issues for our families with adult children. The next committee meeting will be held on April 17. Feel free to contact me, patti@nfadb.org, for more information.

Affiliate Network. On February 7, the NFADB Affiliate Network convened to hear about the achievements of each of the Affiliate organizations and activities in their respective family organizations. NFADB currently has 13 Affiliates and is looking to expand. For more information, contact Myrna Medina (myrna@nfadb.org). The next meeting, scheduled for May 2, will be about strategic planning.

Outreach Committee. The Outreach Committee is excited to welcome new committee members: Ricky Teed, Alexis Ramirez, and Kimberly Moritz. NFADB celebrated Rare Disease Day on February 28 with our annual High 5 NFADB Campaign. Thank you to everyone who participated and sent us a High 5!

The 2023 Steve Perrault Award will honor a family member of an individual who is deafblind who has shown outstanding service, advocacy, empowerment, or leadership. The award will be presented at NFADB's Annual General Membership meeting on July 11, 2023. All NFADB members are invited to attend the meeting, so save the date!!

The Outreach Committee is responsible for NFADB’s social media. For exciting updates and information, follow us on Instagram (@nfadb), Facebook, and Twitter (@nfadb). If you are interested in joining the Outreach Committee, contact Nilam Agrawal (nilam@nfadb.org) and Donia Shirley (donia@nfadb.org). The next meeting will be held on March 20.

Policy, Information, and Education Committee. Our PIE Committee has also been very busy. As noted above, they recently presented at two conferences and are getting ready to lead our first “Day on the Hill” for and with families with loved ones who are deafblind on April 19. They have also completed the second year of NFADB’s Family Advocacy Training and Education (FATE) project and formed the Family Advocacy Coalition Educating (FACE) for Deaf-Blind.

The PIE committee has also established two advocacy discussion forums on the NFADB website. One on Specific Learning Disability (SLD) Identification facilitated by board member Nilam Agrawal and one on Qualifications of Interveners facilitated by board member Ricky Teed. Learn more about these and other activities on the NFADB website Advocacy page. To become involved with the PIE Committee, FATE, or FACE, contact Melanie Knapp (melanie@nfadb.org) and Jacqueline Izaguirre (jacqueline@nfadb.org).

In closing, I must share how grateful I am to our volunteer working board, special advisors, and our members at large. It is time now to Spring into Action! Please join us, as we truly are stronger together as one family voice!

With gratitude,

Patti McGowan, NFADB President

The Fall Report from the President

Jacqueline — Fri, 30 Sep 2022 13:03:17 GMT

Fall 2022 President's Message

Fall Greetings NFADB Members,

It is always an honor to send greetings to the NFADB membership in my biannual President’s Message. It is a time to share updates but most importantly to thank you for your support and ongoing involvement with the National Family Association for Deaf-Blind. Because of each of you, we continue to support families with loved ones who are deaf-blind, advocate on behalf of our deaf-blind community, foster family-to family relationships, build stronger partnerships, and provide information, resources, training, and networking opportunities.

October 1 began NFADB’s 29^th fiscal year as a nonprofit 501(c)(3) organization serving families with individuals who are deaf-blind regardless of etiology, supporting all abilities, and through the entire lifespan. As we begin our new year, our volunteer working board has grown to 17 board members. We welcome four new members: Kim Moritz (OH), Alexis Ramirez (CA), Amanda Schwartz (VT), and Ricky Teed (IA). I would also like to take this time to thank Jacqueline Izaguirre (TX) for her service as NFADB ‘s Treasurer since 2015. As Jacqueline steps back into a general board position, we welcome Brandi Hitzelberger (KY) into an executive position as NFADB’s new treasurer. I hope you will take some time to read and learn more about the hard-working volunteers that comprise the 2022-2023 Board of Directors. I am thrilled to be working with such an exceptional group of leaders in the months and years ahead.

I’d also like to share a few highlights and upcoming events.

Please mark your calendars and register for NFADB’s annual Deaf-Blind Event, “My Family’s Journey: Connection, Advocacy, Empowerment.” This will be a Zoom webinar on Thursday, October 27, at 4:30pm PT / 5:30pm MT / 6:30pm CT / 7:30pm ET. This is NFADB’s annual fundraiser but is free to all families and caregivers. Donations will be used towards continuation of our Family Advocacy Training and Education (FATE) series. Visit the event webpage for more information and to register.

During 2021-22, NFADB conducted a pilot of the Family Advocacy Training and Education (FATE) program, which included family leaders representing eleven organizations from across the United States. The pilot provided six weeks of advocacy training and six weeks of working with a professional facilitator to build a national agenda on behalf of our deaf-blind community (children and adults). Many of the participants are continuing their advocacy efforts to support this national agenda through our newly formed Family Advocacy Coalition Educating (FACE) for Deaf-Blind. We began offering the training for a second time on September 8, 2022. Learn more on the Advocacy page of NFADB’s website.

A special Thank You to the NFADB members who were able to join the NFADB Board of Directors for our annual general membership meeting on July 12, 2022. Without a doubt, this is our favorite board meeting of the year! One of the highlights is the presentation of the Steve Perrault Award. This year two professionals who have made a difference to families in the deaf-blind community received the award—Kathy McNulty (NY) and Faye Manaster (IL). NFADB congratulates Kathy and Faye and all the nominees. The 2023 Steve Perrault Award will recognize a family member. Nomination information will be forthcoming.

Please be watching for email announcements from NFADB as well as our social media platforms to stay up-to-date on all our activities. We are planning an NFADB Ambassador training, state specific socials for members, and family focus chats in the coming months.

As I look ahead to the upcoming year, I would like to share one of my favorite adages: “Many hands make light work.” There is tremendous power in the size of our membership and the talents our members bring to our association. Through our collective action, I am confident we can continue to fulfill NFADB’s mission. Please feel free to reach out to NFADB at any time. We are better together!

Wishing you and your families a wonderful fall and upcoming holiday season!

Kind regards,

Patti McGowan, NFADB President

The Spring Report from the President

Jacqueline — Mon, 21 Mar 2022 22:56:09 GMT

President's Message, Spring 2022

Spring Greetings to all!

I hope this finds you and your families in good health and looking forward to the spring and summer seasons of 2022. Spring is the perfect time for renewal, budding ideas, and to thank all of you for your continued support of and engagement with NFADB.

Changes to the Board

NFADB began the new year with changes to the board and new and ongoing activities.

Our Vice President, Diana Griffen, stepped down from her position after serving the board for eight years. Her mom, Mary O’Donnell, was one of the founding members of NFADB and it has been an honor and a privilege to work with Diana as she continued her mom’s legacy and passion for the deaf-blind community. We are grateful for her service to our mission and membership and for her lifelong friendship. She will be missed.

NFADB is pleased to announce the following new board positions:

Vice President, Donia Shirley (FL)
Secretary, Katrina Michael (FL)
Board Member, Brandi Hitzelberger (KY)

And beginning in May, NFADB will welcome Kristen Layton, Director of Information, Research and Professional Development for HKNC, who will join the board as a Special Advisor.

Updates

In February, NFADB Board members, NFADB Affiliate Network members, and NFADB Ambassadors represented NFAFB at the National Center on Deaf-Blindness 2022 Deaf-Blind Summit on family engagement.

In March, members of NFADB’s executive committee attended additional Deaf-Blind Summit sessions on access to the general education curriculum.

NFADB has welcomed more than 80 new families from Michigan, thanks to DeafBlind Central, the Michigan deaf-blind project, and we are beginning to work with the Kansas Deaf-Blind Project on ways to support and engage families.

During January and February, the Family Advocacy Training and Education (FATE) project completed Phase II of the pilot year. Kudos to the state and national organizations that came together to train and collaborate to build a national agenda for advocacy on behalf of our deaf-blind community. Three top outcomes from the pilot:

Advocacy Ask #1: Require states to include “services to students who are deaf-blind in special education state plans,” via addenda to existing plans and inclusion in future state plans.
Advocacy Ask #2: Require states to develop a Plan for Adults who are deaf-blind to ensure the timely implementation of appropriate services and supports following transition from school to adult life, including but not limited to post-secondary education, the workforce, or other community settings with the goal of living a purposeful life of their choice.
The creation of a Family Advocacy Coalition called Family Advocacy Coalition to Educate for Deaf-Blind (FACE for DB) https://www.nfadb.org/FACEforDEAF-BLIND/

Led by our Outreach Committee, on February 28, we participated via our social media platforms in a celebration of Rare Disease Day. Much gratitude to our members for their engagement and encouragement.

Upcoming Events and Activities

The NFADB Affiliate Committee is providing professional development to the NFADB Affiliate Network, their boards, and membership with a three-part series. If you are involved with one of the NFADB affiliates, please take advantage of this opportunity. https://www.nfadb.org/event-4694899

March 28: Leadership Presentation
April 25: Affiliate Sharing-Strategic Planning
May 23: Assisting Family Leaders

The NFADB Policy, Information, and Education (PIE) Committee will host its next Cogswell-Macy Act: A Family Focus Update on March 30 at 7 pm eastern https://www.nfadb.org/event-4734171

Beginning in April, our Nominations Committee will announce the commencement of our nomination period for 2022-23. NFADB is looking for members to volunteer on our committees and/or take on specific tasks. Please share your talents and skills with us!

Save the Dates

July 12, 2022: NFADB Annual General Membership Meeting, including the announcement of the first Professional Steve Perreault Award

October 19, 2022: NFADB Annual Deaf-Blind Awareness Event (virtual) hosted by NFADB’s Development Committee

As always, NFADB appreciates our members, and we are here to serve you and your family.

My best always,

Patti McGowan

NFADB President

The Fall Report from the President

Jacqueline — Thu, 30 Sep 2021 04:00:00 GMT

NFADB President’s Message, Fall 2021

Greetings NFADB Members,

It is my pleasure to formally send greetings to NFADB members in my biannual President’s Message. Thank you for your ongoing support of and engagement with the National Family Association for Deaf-Blind. Without you, we could not continue our mission to empower the voices of families with individuals who are deaf-blind and advocate for their unique needs. Together we are better!

October 1 begins NFADB’s 28^th fiscal year as a nonprofit 501(c)(3) organization serving families. As we begin our new year, it is an honor to introduce two new board members, Lisa Lapatofsky (PA) and Katrina Michel (FL). Both are parents to young children who are deaf-blind and hold executive positions with their state NFADB Affiliates—the Pennsylvania Partnership for DeafBlind (PPDB) and the Family Partners for the DeafBlind of Florida and the U.S. Virgin Islands (FPDB-FL/VI). The NFADB executive committee also congratulates board member Donia Shirley as she steps into the role of NFADB secretary.

NFADB will hit the ground running this fall and in the coming months with multiple events, trainings, and opportunities. For more information, see the “Upcoming Events” section of our website, Events

October 2021:

NFADB Cogswell-Macy Act (CMA) Twitter Blast, October 1 through 7
The Family Advocacy Training & Education (FATE) Phase I begins October 7 with national family organizations and NFADB Affiliates
Nominations begin for the 2022 Steve Perreault Award (professional recognition year)
October 9 (parents) and October 16 (students) virtual table at the Transition Fair for Students Presented by the Indiana Deaf-Blind Services Project and Helen Keller National Center for Deaf-Blind Youths and Adults
October 20 “Got Transition” webinar on the transition from pediatric to adult health services

November and December 2021:

Family Advocacy Training & Education (FATE) continues
Family Focus Chats (dates TBD)
Nominations for the Steve Perrault Award close at the end December

January 2022:

Phase II of the Family Advocacy Training & Education (FATE): Facilitation of National Advocacy Agenda

February 2022:

Phase III of Family Advocacy Training & Education (FATE):

Day on the Hill

A glance back at a few highlights, celebrations, remembrances, and events from my last report.

September 2021:

NFADB joined the Deaf-Blind Multihandicapped Association of Texas (DBMAT) Virtual Camp Conference
NFADB’s 5^th Annual Deaf-Blind Experience—My Family’s Journey: Navigating Life’s Transitions
2021-22 Family-to-Family Communities (F2FC) kick-off
Cogswell-Macy Act: A Family Focus Update
Social Media stats: Instagram – 721 followers; Facebook – 3,168 followers, post reach – 4,764; Twitter – 344 followers

August 2021:

NFADB Ambassador project begins training 13 NFADB Ambassadors across the country

July 2021:

Annual NFADB General Membership Meeting
The Steve Perreault Award announcement – Congratulations to Clara Berg (NY) and Gordon Boe (PA)
Welcomed the California Deafblind Network of Family Support Providers as a new member of NFADB’s Affiliate Network
NFADB joined breakout discussions at the CHARGE Syndrome Foundation virtual conference

June 2021:

Joe McNulty, 1947-2021. A life so beautifully lived deserves to be beautifully remembered. Joe was instrumental in the work and strengthening of NFADB and we will always be grateful for his support, wisdom, and guidance.
The Pennsylvania Partnership for the DeafBlind (PPDB), and NFADB Affiliate, presented at the PA Deaf-Blind Project’s virtual Family Learning Conference.

May 2021:

NFADB developed a page on the website specific to families with adult children to share information, resources, and activities

April 2021:

NFADB presented at the Southeast Regional DeafBlind Webinar Series

March 2021:

The Texas Symposium on Deafblind Education https://m.facebook.com/story.php?story_fbid=263207725608134&id=104449901483918
Welcomed Laneof Inquiry as a new member of the NFADB Affiliate Network

NFADB will continue to work hard for our members and families of individuals who are deaf-blind. Please take a few minutes to visit our website, meet the board, and volunteer with us. There are five wonderful working committees that all members are invited to join. If you have a special talent and or skill, please let us know! We are in the deaf-blind community together and our voices can be heard!

Wishing you and your families a wonderful fall and holiday season!

Kind regards,

Patti McGowan, NFADB President

The Spring Report from the President

Jacqueline — Wed, 31 Mar 2021 23:03:00 GMT

NFADB President’s Message, Spring 2021

Greetings NFADB Members,

Spring is here! A new season, a new outlook, a fresh start. Each spring I look forward to writing this report as an opportunity to thank you for your membership and tell you about our ambitions for the upcoming months. Considering everything we have gone through together in the past six months, let alone this year to date, this report is especially important.

PAST

It has now been officially over a year. A year of quarantine. A year of challenges. NFADB has worked hard to stay connected and support our membership. We have continued to keep families informed of learning opportunities that we can all attend virtually and have expanded our social media platforms. This has allowed us to share announcements, lessons, webinars, videos, quick activities, networking opportunities, and more.

As I look back, I am humbled when I consider the number of members, agencies, and organizations that have depended on NFADB and partnered with us to support our families and members. I appreciate the strong relationships we have built with all of you.

PRESENT

Our 2021 spring, summer, and most likely the remaining months of this year will continue to look a bit different. NFADB has not let the challenges of the pandemic distract us. We continue to advocate, foster family-to-family relationships, promote partnerships, and provide information and resources. We are just wrapping up a wonderful opportunity as a partner for the 2021 Texas Symposium on Deafblind Education, where we joined forced with a network of families and colleagues from Texas, the USA, the Americas, and around the world. The Symposium included an excellent Family Day, and we were so honored to host the Mary O’Donnell Family Social, an NFADB tradition.

Another ongoing learning opportunity to watch for is the Southeast Regional DeafBlind Webinar Series that began in March and will run through June 2021.

FUTURE

Mark your calendars for the annual NFADB Membership Meeting on Tuesday, July 13, 2021 (7:00-8:30 eastern). All members are invited. You will hear more about our Family Advocacy Project as well as the announcement of our first ever Steve Perrault Award recipient(s). There will also be information about the upcoming NFADB Annual Deaf-Blind Awareness Event slated for the fall of 2021. We have a great deal to celebrate with our members and affiliates as the network grows. The past 27 years would not have possible without our loyal members and caring partners.

While we cannot predict the future or what the remainder of 2021 will bring, we can promise you this: NFADB is committed to empowering the voices of families of individuals who are deaf-blind and advocating for their unique needs.

May the coming seasons bring you brightness in each and every new day.

With Gratitude,

Patti McGowan

NFADB President

The Fall Report from the President

Jacqueline — Thu, 01 Oct 2020 05:00:00 GMT

Fall Greetings NFADB Members,

I am so proud of the strength and character of our deaf-blind community. Like other organizations, NFADB is encouraged by and thankful for the support we have received from our members and partners during the pandemic, to ensure that our families with individuals who are deaf-blind are doing okay. There has been so much change in a such a short period of time to the world around us—our families, friends, neighborhoods, gathering places, workplaces, and homes. Life during COVID-19 has sparked fear, frustration, and anxiety. It’s easy for distractions, criticism, and stress to creep in and overwhelm us. We have had to make hard decisions, especially for our loved ones who experience deaf-blindness. But if there is one thing I can say about families with individuals who are deaf-blind, it’s this—WE ARE RESILIENT! We are a network, we support one another, and we will get through this.

October 1, 2020 is the beginning of the new fiscal year for NFADB and in this letter I’ll update you about some changes and exciting opportunities for the coming year. First, I’m thrilled to announce that we will have the following four new members on our board of directors beginning October 1:

John Butterflies from Kansas City, Missouri
Janet Murray from Weymouth, Massachusetts
Donia Shirley from Miami, Florida
Sarah Steele from Austin, Texas

Please take a few minutes to visit nfadb.org to learn more about these and other board members. We want to hear from you, so feel free to reach out to any of us at any time.

I wish to extend a special thank you to Edgenie Bellah, who will remain on the NFADB board, but is stepping out of her position as Affiliate Coordinator, which she has held for six years. We as a board commend her efforts and leadership as the affiliate network has grown. We encourage deaf-blind state and family-driven organizations to become affiliates of NFADB. To learn more, go to our NFADB Affiliate Network web page.

On October 22, we will hold our annual Deaf-Blind Awareness Event. This event is typically held in person at the People’s United Bank in Manhattan but will be virtual this year. People’s United Bank has once again graciously agreed to sponsor it. The theme is “My Family’s Journey: Advocacy, Self-Care, and Resilience.” A virtual version will be a first for NFADB. Much credit goes to our Development Committee for boldly stepping up to the challenge and planning and implementing what we hope will be a successful event that you can attend from the safety of your home. For more information and to register or donate, visit our NFADB Deaf-Blind Experience web page (nfadb.org/fundraisers).

In late October, NFADB will announce the Steve Perrault Annual Award in honor and memory of our dear friend. Steve was instrumental in the conception of NFADB and never stopped his support and advocacy for and with the NFADB board until his passing in October 2019. We greatly miss Steve and have established this award to honor him on behalf of NFADB. More information will be available soon.

As 2021 draws near, we are looking forward to a collaboration and partnership with the Texas Deafblind Outreach Project and Deafblind International (DbI) to conduct the March 2021 Texas Education Symposium.

NFADB’s Policy, Information, and Education (PIE) committee is planning to lead family organizations and partner with the Deafblind Coalition on an advocacy training effort called the Family Advocacy Project. Its purpose is to train family members who hold leadership skills to advocate on issues important to the field of deaf-blindness. Participants will work together to develop actions and an agenda to advocate at both state and national levels. NFADB’s mission is to empower the voices of families. Our mission will strengthen as we unite on advocacy efforts.

I always wish to encourage our members to become involved in NFADB activities. I invite you to join a committee, share your family story, invite friends to become members, and donate to our organization. We are up and running with an active Facebook page and Instagram and Twitter accounts. These and our membership email blasts continue to promote and foster family-to-family relationships, provide information and resources, and invite members to take advantage of deaf-blind opportunities (both educational and social).

In closing, I wish all of you a beautiful and colorful fall season that rolls right into an extended time of holiday cheer. Thank you again for your ongoing support of NFADB.

Fondly,

Patti McGowan

NFADB President

The Spring Report from the President

Jacqueline — Sat, 21 Mar 2020 01:11:50 GMT

Dear NFADB Members,

The past several weeks have presented all of us with personal health and family concerns never before seen. In this environment, staying connected- for information, resources, planning, and emotional reasons-is more important than ever. At NFADB, we are committed to being a reliable association to you and your family in difficult times, just as we are in good times. We know you are the frontline in supporting your loved ones and individuals with deaf-blindness and NFADB wants to support you now more than ever.

The overwhelming news on the coronavirus can be confusing and frightening to all of us. We can’t know precisely when the coronavirus will be contained and familiarity restored. Until then, please be assured that the NFADB Board of Directors are available to our members. As a reminder, you can connect to NFADB info@nfadb.org anytime, and directly reach any of the board members by using their first name @nfadb.org. We are sharing resources and information via our NFADB Face Book https://www.facebook.com/NFADB/ and Instagramhttps://www.instagram.com/nfadborg/ to keep our families and community connected and continue to share information.

NFADB exists to empower the voices of families with individuals who are deaf-blind and advocate for their unique needs. We are in the deaf-blind community together and we are here for our members!

Be safe and be well.

Sincerely,

Patti McGowan, NFADB President and Board of Directors

www.nfadb.org

NFADB's President Fall Report

Jacqueline — Tue, 01 Oct 2019 13:55:32 GMT

October 2019 - President’s Bi-Annual Report

Dear NFADB Members,

Fall Greetings from NFADB. On behalf of myself and our current and newly elected board members, I would like to welcome you to the 2019-2020 year for the National Family Association for Deaf-Blind (NFADB). On behalf of myself and our new board, we look forward to working with all of you in the coming year. As we begin the new fiscal year (October 1, 2019), I would like to provide you with information to get us all started on making 2019-2020 another great year for NFADB.

Although this report is a bit long, I hope that you will take time to review it carefully as there is important information to help you become involved with NFADB. It includes: (1) thanks to our outgoing board members; (2) election results and a complete list of board members; (3) committees and committee chairs; (4) NFADB’s organizational structure, (5) how to get involved—call for open positions and committee membership, and (6) a glance at the past six months. Before the report begins, I would like to honor and recognize Steve Perreault.

In Memory

It is with great sorrow that we share the news that our dear friend and Special Advisor of NFADB, Steve Perreault, passed away. Steve was instrumental in the development of NFADB and a longtime supporter of families with individuals who are deaf-blind. Steve was a kind, caring friend to all and will be dearly missed by our deaf-blind community.

Outgoing Board Members

We would like to thank Debra Pickens for completion of a one-year board vacancy position and for her service to NFADB’s Adult Life Committee. Debra did a tremendous job providing excellent resources about transitioning to adult life.

A heartfelt thank you to Nancy O’Donnell, NFADB Special Advisor. Nancy has been with NFADB since its inception 25 years ago and will be an NFADB friend for life. Although she has stepped out of the formal role of Special Advisor, NFADB will always look to Nancy for guidance, mentorship, and historic information. We look forward to future collaborative events where we know our paths will cross.

2019 NFADB Elections

NFADB is a nonprofit organization made up of a volunteer working board of family members of individuals with deaf-blindness and two professionals. We have eleven board members, two special advisors, and one part-time employee, our administrative assistant.

NFADB completed its election in June and announced the elected board at the July Annual General Membership Meeting. Please join me in welcoming new board members Nilam Agrawal (TX), Marvin Jones (OH), and Rebecca Cowan-Story (GA). I would like to thank everyone who ran for office and indicated interest in being appointed to open positions. You can learn about all our board members on the NFADB Board of Directors page on our website (https://nfadb.org/page-18080).

Current Board of Directors:

Role & Name	Term
President, Patti McGowan	Oct. 1, 2018-Sept.30, 2020 (1^st term)
Vice President, Diana Griffen	Oct. 1, 2019-Sept. 30, 2021 (2^nd term)
Treasurer, Jacqueline Izaguirre	Oct. 1, 2018-Sept. 30, 2020 (2^nd term)
Secretary, Melanie Knapp	Oct. 1, 2019-Sept. 30, 2021 (1^st term)
Affiliate Coordinator, Edgenie Bellah	Oct. 1, 2018-Sept. 30, 2020 (3^rd term)
Board Member, Nilam Agrawal	Oct. 1, 2019-Sept .30, 2020 (1^st term)
Board Member, Mary Gyori	Oct. 1, 2019-Sept. 30, 2021 (1^st term)
Board Member, Kim Huston	Oct. 1, 2019-Sept. 30, 2021 (3^rd term)
Board Member, Marvin Jones	Oct. 1, 2019-Sept. 30, 2021 (1^st term)
Board Member, Myrna Medina	Oct. 1, 2018-Sept. 30, 2020 (1^st term)
Board Member, Rebecca Cowan-Story	Oct.1, 2019-Sept. 30, 2021 (1^st term)

Special Advisors:

NCDB Liaison Special Advisor: Megan Cote
NCDB Liaison Special Advisor: Peggy Malloy

Administrative Assistant:

Allan Santiago

Standing Committees

Executive Committee: The Executive Committee’s mission is to serve NFADB’s Board of Directors by researching, reviewing, and organizing information required for efficient consideration and strategic planning by the Board and optionally making recommendations or proposals based on such information.
Nomination Committee: The mission of the Nominations Committee is to carry out responsibilities related to NFADB’s nomination processes and procedures, as well as related matters required by NFADB Bylaws. Its key responsibility is to identify individuals qualified to be nominated for election to the board of NFADB.

Ad Hoc Committees

For 2019-2020, NFADB will have seven ad hoc committees. Our goal for each is to provide a service for our members and for the association. The missions and committee chair for each ad hoc committee are as follows:

Adult Life Committee – Chair, Patti McGowan

The mission of the Adult Life Committee is to share information, resources, and activities that help individuals who are deaf-blind, and their families, dream, plan, strategize, and break down barriers, in order to attain a safe, happy, inclusive life for the family member who is deaf-blind.

Affiliate Committee – Chair, Edgenie Bellah

The Affiliate Committee’s mission is to serve as a conduit for the NFADB Affiliate Network to partner in influencing national trends and legislation, providing a platform for leadership development, and promoting NFADB membership.

Finance Committee – Chair, Jacqueline Izaguirre

The Finance Committee provides oversight responsibilities to ensure NFADB is fiscally responsible with respect to budgeting, safeguarding assets, financial reporting, and compliance with federal and New York State tax reporting.

Development Committee – Chair, Mary Gyori

The mission of the Development Committee is to build relationships and enlist the help of individuals or organizations who support NFADB’s overall mission and can provide the financial support that will meet the specific ongoing needs and well-being of NFADB.

Membership Committee – Chair, Kim Huston

The mission of the Membership Committee is to support NFADB goals by:

Conducting recruitment campaigns
Developing and implementing innovative ways to attract new members
Retaining current members
Encouraging member participation in NFADB committees and activities
Maintaining an up-to-date membership list that can be used for NFADB outreach and fundraising

Outreach Committee – Chair, TBD-Full Board Participation

The mission of the Outreach Committee is to ensure that every family supporting an individual with deaf-blindness has an awareness of NFADB and our resources.

Policy Information and Education (PIE) Committee: Co-Chairs, Melanie Knapp and Jacqueline Izaguirre

This committee provides public support for and makes recommendations for particular causes or policies that will benefit the deaf-blind community.

Organizational Structure

Based on a suggestion and support from the National Center on Deaf-Blindness, we have developed an Operations Manual to support NFADB management and processes. It includes existing policies and processes well as new ones that are being considered and developed. As such, it is a living document that will continue to be added to and edited for accuracy and clarity. Annual review of the manual and suggestions for edits and additions will be made by the board. By collecting and organizing this information, NFADB will be able to more efficiently manage itself as a volunteer organization with limited time and resources. It should also increase continuity over time through the board member transitions and other changes that all organizations encounter.

How to Get Involved

We are excited about the upcoming year and would like you to get involved with NFADB! We currently have a few vacant positions and are seeking interested individuals:

Editor for family stories posted on the NFADB website
Individuals to assist in developing a process for scholarships for families to attend state and national conferences
Individuals to assist in making NFADB resources accessible
NFADB ambassadors
NFADB historian
NFADB podcasts editor and transcript creator

In addition, we need members for the following committees: Adult Life, Affiliate, Development, Membership, Outreach, and PIE. If you are interested in one of the vacant positions and/or committee membership, please email me directly at patti@nfadb.org and include your name and the position or committee in which you are interested. If you are interested in more than one, that is fine! Please just rank your preference and we will include you where you are needed most.

We are also always looking for members to become NFADB Ambassadors and provide training for individuals interested in this role. NFADB ambassadors serve as the faces and voices of our association. They build brand recognition and share our beliefs and mission. The purpose of the training is to help interested individuals feel comfortable promoting NFADB to a variety of audiences. It includes information on the following areas and can be offered on an as-needed basis:

NFADB outline: How to talk about NFADB
NFADB PowerPoint slide presentation
NFADB brochure
NFADB committee document

This goal of the NFADB Ambassadors program is to increase awareness of NFADB, generate support for families, increase our membership, recruit volunteers, and identify potential family organizations to become NFADB affiliates.

Activities Over the Past 6 Months at a Glance

October 4–5, 2019: NFADB Full Board Face-to-Face Meeting at the Helen Keller National Center
October 3, 2019: 3^rd Annual Deaf-Blind Awareness Experiences Event, NY
September 27–29, 2019: Hosted an exhibit table at the Deaf-Blind Multi-handicapped Association ofTexas (DBMAT) Family Weekend, Texas
September 2019–May 2020: Facilitating Family-2-Family Communities Project Adult Life Group
August 2–5, 2019: Hosted an exhibit table at the 14^th International CHARGE Syndrome Conference, Dallas, TX
July 13, 2019: Hosted an exhibit table at the 11^th Annual Usher Syndrome Coalition USH Connections Conference, Philadelphia, PA
July 11–14, 2019: NFADB Awareness Session at the Global Foundation for Peroxisomal Disorders (GFPD) Conference, Washington, DC
June 21–22, 2019: Co-hosted exhibit with State Affiliate, Pennsylvania Deaf-Blind Project Family Learning Weekend, PA
May 31–June 1, 2019: Hosted an exhibit table, Southern California 2019 Family Workshop, Long Beach, CA

If you would like NFADB representation at your conference or other event that includes families with individuals who are deaf-blind, please contact us. We will do everything in our power to have a board member or NFADB Ambassador attend to bring awareness of NFADB to your function.

Thank you for bearing through this long report. NFADB has been busy and I wanted to share all of our good work with our members. We are looking forward to an exciting year with NFADB and your involvement. We are grateful to our members and hope that with your help we can continue to advocate on behalf of families, foster family-to-family relationships, promote partnerships, and provide resources, information, and training opportunities for families.

Best Regards,

Patti McGowan, NFADB President

NFADB'S President Spring Report

Jacqueline — Mon, 01 Apr 2019 14:04:40 GMT

Dear NFADB Members,

As I approach the end of my first six months as NFADB President, I am humbled by the trust you have placed in me and the good work of the presidents in whose footsteps I follow. I thank all of you.

I and our members are fortunate to have a high-powered and hard-working board. Your NFADB Board of Directors, made up of 13 individuals—8 family volunteers, 1 professional volunteer, and 4 special advisors—continues to work tirelessly for the good of our association and is committed to NFADB’s mission. Learn more about our board members on our website.

The past six months have been exceedingly busy.

New members joined the Executive Committee and Board of Directors. During these transitions we took some time for Board orientation and training on many topics, including our individual roles and responsibilities, NFADB’s legal responsibilities, and how to be effective NFADB ambassadors.
We are updating our branding and brochure and increasing our social media venues.
We reviewed our management processes and procedures and have begun to revise guidelines and policies and create an operation’s manual to support our work.
We are in the process of transitioning to a new software program to support administrative activities, such as membership tracking, events, and training opportunities. It will also house our upcoming redesigned website and provide new features for our members such as forums that foster family-to-family relationships. We will announce its availability as soon as it goes live.

NFADB committees continue to be the lifeblood of our organization. Several were formed at the specific request of members. NFADB encourages and invites general members to become involved. I know you will find committee work a rewarding experience and the committee chairs welcome your participation. Find their contact information on the volunteer section of the NFADB website.

NFADB exists to empower the voices of families with individuals who are deaf-blind and advocate for their unique needs. Since October 2018, we have represented NFADB at the:

New York Deafblind Collaborative Parent Day, Queens, NY, December 2018
Texas Deafblind Symposium, Austin, TX, February 2019

We look forward to the following NFADB Ambassador and Exhibit Opportunities during the spring and summer:

SoCal Workshop Weekend for Families and Educators, Long Beach, CA, May 31-June 1, 2019
Pennsylvania Family Learning Conference, State College, PA, June 21-22,2019
USH Connections Conference, Philadelphia, PA, July 13, 2019
International CHARGE Syndrome Conference, Dallas, TX, August 2-5, 2019

Please save the date for our annual General Membership Meeting, which will be held online at 7:00 pm Eastern Time, July 9, 2019. All general members are invited to attend. More information will follow.

Continue to celebrate NFADB’s 25^th Anniversary year during 2019! Originally started by and for families in 1994, NFADB has expanded to include any interested individuals, professionals, state family affiliate groups, organizations, and agencies who wish to empower the voices of families with individuals who are deaf-blind, regardless of age or ability. We are in this deaf-blind community together!

Again, thank you for this opportunity to serve as your President. Don’t hesitate to email (patti@nfadb.org) or call (724-864-2553) me with any NFADB concerns you may have.

Respectfully,

Patti McGowan
President
National Family Association for Deaf-Blind