Consistently Supporting and Connecting Families Jayne Dixon Weber - - PowerPoint PPT Presentation

Consistently Supporting and Connecting Families

Jayne Dixon Weber Missy Zolecki Laureen Majeske

Consistently Supporting and Connecting Families

Provide unwavering support for every family affected by Fragile X, while relentlessly pursuing a cure.

• Increased access to expert care for all families
• Consistent referral process for newly diagnosed
• Educating families, professionals and the community
• Family outreach

Increased access to expert care

• Fragile X Clinical & Research Consortium formed in 2006
• Started with 11 FX clinics - now have 30 FX Clinics established across

the country

• All clinics see those living with Fragile X syndrome while also

providing services and/or referrals for FXTAS and FXPOI.

• Consortium now putting more emphasis on providing adult services
• Many of the clinics also participate in collaborative research efforts

Increased access to expert care

• Participation in FORWARD grant results in new consensus documents

useful to all families

• In 2016 and 2017, NFXF offered FX Clinic Research and Support Fund

Grants

• NFXF is seeking to establish clinics in underserved areas, while

increasing the support available for all clinics

Referral Process for New Families

• Upon initial call/email from a new family to Jayne:
• If I know where they live – I refer them to the nearest FX clinic and CSN

group, in addition to providing FX information

• If I don’t know/can’t tell where they live, I ask – if they reply, I make those

referrals

• I also ask if they would like me to give their name/contact info to the CSN –

rarely do they give permission

• On my email I add: Unless you object, I will add you to the NFXF email list.

It will help keep you up-to-date on the latest Fragile X information

Referral Process for New Families

• Upon initial call/email of a newly diagnosed family to a CSN
• Leader should:
• Refer family to Jayne.
• Jayne will request to add them to the NFXF email list.
• Remember: Families want to contact others when they are ready
• Q & A

Educating Families, Professionals and the Community

• Individual outreach to families
• Professional outreach to
• Educators
• Healthcare providers
• Advocacy
• Becoming a STAR Local Advocate
• Making others aware of the STAR program
• Sibling and Self-Advocate Network
• Engaging siblings and self-advocates in CSN

Educating Families, Professionals and the Community

• Raising awareness
• Information tables
• Speaking to community, civic or school groups
• Engaging healthcare professionals
• Connecting with educators

Educating Families, Professionals and the Community

• The NFXF Learning Series is designed to:
• Provide more effective planning tools
• Share best practices from experienced CSN

leaders

• Expand consistency in education programs

across the CSN

• Logo
• Branding
• Messaging

Educating Families, Professionals and the Community

• The NFXF Learning Series is designed to:
• Offer opportunities for collaboration among CSNs
• Leverage local sponsorship opportunities
• Raise awareness of Fragile X and the profile of NFXF

By participating in the Learning Series, you are ensuring that families across the country have access to vital information, expert advice and connection to the Fragile X community.

Educating Families, Professionals and the Community

• The Learning Series includes:
• Planning timelines
• Budget Planning Guidance
• Sponsorship information
• Suggested speakers and topics
• Tips and templates for
• Agendas
• Announcements
• Evaluations
• Certificates

Chapters have access to the Classy Platform for Education Programs, Family Events and Fundraisers.

Family Outreach

• Think about “Your Story”
• Design a mission statement (both for yourself and for your group)
• Think about why you are doing this and what you want to accomplish

Starting Out

• One on One Conversations
• Giving families an opportunity to engage with someone who has

been there

• Because it is only one person listening, many times the other

person will feel more comfortable sharing their grief, their concerns or their feelings

Personalized Meetings

• Organized parent meetings that offer information and encourage dialogue
• Small group meetings (3 to 6 parents)
• Can be more effective than large group meetings
• Allows more time and space to share information
• Provides an opportunity to correct misinformation in a productive way
• Try to make it personal with large groups, too
• Call on people to share their advice or their story, sometimes they are too anxious to

participate without being asked

• Parents trust other parents when it comes to information about their children

because it offers a peer to peer perspective

• Reaching out across the state
• Meeting call in’s
• Directory

(TKCalifornia)

First Impressions

• Are extremely important
• Make time for everyone
• Send thank you cards, get well cards, sympathy cards; all show that

you care

• Create welcome packets
• Put in extra brochures so that people can pass them out to family, friends,

teachers and other professionals

• (This can also help ‘spread the word’)

Research Th The Needs of f th the People in in Your Co Community

• Send out a survey to your email list or address book
• What are they looking for in your group (socialization, information)?
• What do they hope to get out of participating (support, friendship,

fundraising opportunities)?

• What kinds of activities would they like to see?
• Do they have any contacts that would be helpful in planning events,

for donations or sponsorships, as speakers, etc.?

• Any other suggestions?
• Survey Monkey

Pla lanning

• Set up a plan and decide which projects fit in with your mission

statement

• What is your time commitment?
• Not everyone’s time commitment is the same
• Make a list of goals
• 1 Year
• 2 Year
• 3 Year
• Even 5 Years down the line
• Fundraising
• EventBrite.com
• Classy.org
• Create customized event pages, sell registrations, track attendance

Promote, Promote, Promote

• Promote your mission and goals
• Write press releases and PSAs
• Submit an article to your local newspaper
• Leave flyers around town targeting your audience
• Meet with other non-profits to see if you can work together
• Autism Speaks
• Autism Alliance
• Join the Chamber of Commerce
• Write your Congressman/woman and Senator
• And don’t forget your Mayor, who has a keen interest in what is going on in your

community

Oth ther Id Ideas

• Outreach Fair
• Local Library
• Hold an information session and they will promote it for you
• Feature a book of the month
• Restaurant Fundraisers
• Your info gets into the hands of the regular patrons as well
• Holiday Cards
• Sponsor a Movie Night
• Show a preview of your group
• Put flyers in the seats or hand out as patrons walk in

Sh Sharin ing You

• ur Best Id

Ideas

• What have you found most effective?
• When meeting a new family
• When out in the community
• When you are fundraising
• What is your best family outreach advice?