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

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