NODCC September 2022 Newsletter- Corrections

Whoops!! We were so excited to get the newsletter out to you we made a few errors. Sarah Gaur is really Stephanie Gaur. Please read her blog post https://www.raisingbklyn.com/post/a-new-extended-family-nodcc

Also, the call tomorrow night is for fathers that have a child with a DCC. We would love all our great dads to join this Zoom call!!

Dads of the NODCC

September 20, 2022

4:30 pm PST / 5:30 pm MST/ 6:30 pm CST / 7:30 pm EST

This is a meet and greet session for dads who have a child with a disorder of the corpus callosum.

News from the NODCC

NODCC Conference 2022 Wrap Up

The 2022 NODCC Conference in Frisco, Texas was an amazing experience. We had 454 registered attendees, 50% of those were first-time attendees. For the first time ever we hosted our conference with a virtual option. We had over 70 people join us from all over the world online.

This year we started off with a special event on Thursday, The Cortical Connections 2022 Research Updates Seminar. Presented by the International Research Consortium for the Corpus Callosum and Cerebral Connectivity (IRC⁵). This full day seminar included research lectures by the most prominent scientists in the study of corpus callosum disorders. Over 70 lecture & discussion groups were presented throughout the weekend. We had a great time Saturday night kicking off the NODCC 20 year anniversary celebration with dinner, DJ and dancing.

We had 62 Adults with DCC attend sessions especially designed with them in mind. A huge "THANKS" goes out to Mitchell Spezzafeeri, Ashley Vaillancourt & the team from Fuller for coordinating the Adults with DCC program. Emma Charles led our 32 Teens & Adult Siblings sessions again this year. They had a great time going to the baseball game & go carting and cannot wait to see each other in 2024!

Here are some reactions to attending this years conference:

I sat in a chair beside Chris in quiet anticipation of the first session, glancing meekly at the other parents sitting near me. There was a nervous energy in the air of the divided ballroom. This was the first session of my very first NODCC Conference in Frisco, TX this past July.

These were the parents who understood what it was like to be given terrifying news about their child– they knew what it was to leave appointments with more questions than answers.

These were the parents who understand the ins and outs of MRIs, EEGs, seizures, IEPs, therapies, and devices.

These are the parents who understand what it is to second guess your decisions and hope that you’re making the best choices for your child.

These are the parents who understand the purest form of joy that a child with a disability can bring to the family.

Read her complete blog post at https://www.raisingbklyn.com/post/a-new-extended-family-nodcc

~Stephanie Gaur, First time attend parent & mother to Brooklynn

The 2022 conference was a great time of reconnecting with faces I hadn’t seen in 4 years or more, and connecting with the first time attendees that I felt like I’ve known my whole life. That’s what made this years conference special-was the connection. I’ve always said it’s like one big family reunion, a place I feel at home. A space I can be myself, around others who are themselves. There was lots of laughter, meaningful conversations, and fun activities to participate in.

~Sarah Mellnik, Adult with DCC

As I reflect on our conference from this past year I am constantly reminded of all the wonderful and amazing people that I had the pleasure of connecting with over those 3 days. As someone who was attending my 5th conference, my experiences have changed over the years. When I first started coming it was all about gaining knowledge and information. How could I best serve and care for Josiah? This is still a theme for me but my focus has shifted more towards meeting people and sharing life with them. I’ve also started to see myself a little as someone who can offer some advice, not because I have all the answers but because I have years of experience with Josiah. It doesn’t mean that my advice can apply to everyone but I have found myself meeting people and just shooting the breeze with them. Those moments are what I remember most about Frisco. It was so great to be back together after 4 years apart and I can’t wait for our next conference in 2 years.

~Mike Molettiere, Father to Jonah

If you weren't able to make it to Texas we missed you. Start planning now on attending in two years in the Washington DC area. More information as we firm up location and date.

A very special "thanks" to Barbara for coordinating the conference, her fabulous team of Texas families, all the Fonseca family members who helped out and the numerous friends and volunteers! Without you the conference would not run as smoothly as it did. Great Job!!

** Podcast from the conference will be available on our YouTube channel later in the year. https://www.youtube.com/c/NodccOrg

Show Your Support for the NODCC Through Annual Membership

The NODCC was founded to help those who are caring for someone with a disorder of the corpus callosum (DCC) or an individual living with a DCC by providing information and resources, as well as facilitating connections and resource sharing between members. Much of our work in connecting people and reassuring recently diagnosed families requires time and a personal touch. We know that speaking to someone or receiving an email response to your questions is important.

Your NODCC membership helps fund resources as well as our part-time director who can connect individuals and families with the information they need as well as other families within our community. More importantly, your membership represents your commitment to helping the NODCC continue to grow as the leading organization supporting DCC.

The online membership form can be accessed at: https://nodcc.org/get-involved/become_member/

We hope that you will show your support for the NODCC by becoming a member of the or renewing your membership today.

We are a Volunteer Driven Organization!

Twenty five NODCC conference attendees completed and submitted their committee volunteer forms during the July 2 Happy Half Hour. Those applications have been reviewed by the Nominating Committee and distributed to the appropriate committee chairpersons. The committee chairpersons should have contacted you by now. If you have not been contacted, please contact Lynn Snyder, Nominating Committee and Vice President at lynnesnyder1962@gmail.com.

Are you committed to helping for a year? Do you have a special talent? We have a variety of opportunities for you to contribute your time, talents and energy to benefit the NODCC and the individuals and families we support.

https://nodcc.org/get-involved/volunteer/

If you are interested in getting involved with any opportunities or have other skills or talents to share, please contact Barb Fonseca at info@nodcc.org or Lynn Snyder, Nominating Committee and Vice President at lynnesnyder1962@gmail.com.

Here are the latest opportunities to get involved with the NODCC community.

Connecting our DCC Community through Virtual Sessions

September Schedule

Connecting people affected by disorders of the corpus callosum is at the heart of what we do at the NODCC. We are excited to increase and improve our community sessions this year and offer presentations and discussions with experts.

Full session descriptions and registration links for each call are included below. Register for the upcoming calls and watch for details on more sessions coming soon!

Dads of the NODCC

September 20, 2022

4:30 pm PST / 5:30 pm MST/ 6:30 pm CST / 7:30 pm EST

This is a meet and greet session for dads who have a child with a disorder of the corpus callosum.

Expectant Parents and Parents of Newborns with a DCC

September 21, 2022

5:00 pm PST / 6:00 pm MST/

7:00 pm CST / 8:00 pm EST

This is a meet and greet session for parents who have newborns or are currently pregnant with a baby with a disorder of the corpus callosum.

Grandparents of the NODCC

September 24, 2022

8:30 am PST / 9:30 am MST/

10:30 am CST / 11:30 pm EST

This is a meet and greet session for Grandparents who have a grandchild with a disorder of the corpus callosum.

If you would like to suggest a topic for a virtual session, please contact our Community Committee at community@nodcc.org.

Fundraisers & Donations

Matching Gifts:

Don’t forget to check for matching funds from your employer. Many companies have matching gift programs that will equal or exceed employees’ charitable donation amounts.

Amazon Smile

Did you know that your regular Amazon purchases can help raise money for the NODCC? It's a donation opportunity provided through AmazonSmile. Help the NODCC and encourage your friends and family to list the NODCC as the preferred charity on your Amazon accounts. Start contributing today and add the NODCC to your AmazonSmile. Your quick clickheremakes a big difference!

Facebook Fundraisers

Fundraising for charities on Facebook is an easy way to help raise money for the NODCC. Simply click on the “Support Nonprofit” option when creating a new Facebook post and select the NODCC as the recipient. Birthdays, memorials, remembrances, and celebrations are great events to encourage giving from your family and friends.

Looking for other ways to support? The NODCC is searching for sponsors and partners who want to support our organization. We encourage all readers of the newsletter to send company names or potential company contact information toinfo@nodcc.org

Donate to keep our community thriving!

DONATE

See more upcoming events

Volunteer opportunities

(714) 747-0063 info@nodcc.org nodcc.org

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