News from the NODCC
Reflection: 27 Years with a Brother with C-ACC
By Samantha Jones

It wasn’t until my coaches put one of the casts I was a part of aside and gave us an assignment. We were to write down an anonymous secret that would be assigned to another castmate to be performed. A few days later, we received our scripts and I watched my friend Priyanka end her monologue with my words, “I just wish I had a brother who was normal…and for that, I hate myself.”

I had never admitted that to anyone before, and to be honest, I haven’t said it again until this moment. Who wants to admit that? The fact of the matter is, having a sibling with special needs (various abilities, differing abilities, disabled, other abled, or however you feel most comfortable labeling it), is a treasure, and a miracle. We are the ones that are able to get them to eat when no one else can. We can get them to calm down, explain why things work, don’t work, or happen the way they do in a way they can understand. We are their translators. We know their likes, their triggers, and how to make them laugh, or calm them. We know all the intellect, and betterment they bring to the universe. We know that they have beaten odds just being alive, and their light is an extended bonus that a lot of times we don’t deserve.
 
At the same time we know how many nights no sleep is had because of night terrors or insomnia or OCD and bathroom obsessions. We know doctors that have given up saying serious medical issues are “behavioral” or have tossed medication at our siblings in order to zombify them. We have seen our siblings be triggered by the color yellow or red and hit a stranger or melt down in public places. We have lost friends and family because they think our siblings are “weird” or “freak them out” or “don’t want them to touch me” so they won’t “catch” whatever it is “they have.” Hell hath no fury for someone who speaks poorly about my sibling.

Continue reading the full story on our blog by clicking here.
Summer Online Auction Raises $3,800

Our first online auction was a lot of fun and raised $3,800 for the NODCC this year! We would like to thank our Board of Directors and members who donated items for the auction as well as everyone who purchased items. We’d love to build on this fundraiser and continue to grow it in future years. Send us your ideas and join in the planning for next year by contacting Barb at info@nodcc.org.
2022 Conference Planning Committee Ramping Up

Attention families in Texas and surrounding states! The 2022 Disorders of the Corpus Callosum Conference is coming up in your region next summer (July 1-3, 2022). After postponing our 2020 conference (twice), we are moving forward with the conference at the same location next year: Frisco, Texas at the Embassy Suites by Hilton Dallas-Frisco Hotel Convention Center and Spa. The dates are July 1-3, 2022. More to come soon on registration and hotel booking.
 
If you are interested in joining the conference planning committee, please contact Barb Fonseca at info@nodcc.org. We will be restarting our virtual calls in September.
 
To ensure the success of the conference, we need more help in the following areas:
• Silent Auction
• Volunteers
• Exhibitors
• Set up/Tear down
• Fundraising
 
We appreciate the time, generosity, and efforts to help us make the DCC Conference in Texas the largest and best conference yet!
will be shared very soon, but start planning your trip to North Texas!
Volunteering with the NODCC

Interested in getting more involved with the NODCC? In addition to our conference planning committee, we are looking for additional volunteers for the communication, development, and community committees. No experience required – we can find the right spot for you! See our volunteer page here, to learn more about the committees and how you can help Email Barb at info@nodcc.org when you are ready to get started!
Here are the latest opportunities to get involved with the NODCC community.
Connecting our DCC Community through Virtual Sessions

Virtual Calls Resume in September
The virtual call schedule for September are now available.

Upcoming Community Calls:
September 18- Parents of Newborns with DCC
September 18-Teens with DCC
September 18- Adults with DCC
 
Connecting our DCC Community through Virtual Sessions
We have several new sessions scheduled for June to stay connected and form new relationships.
 
Parents of Newborns with DCC
Saturday, September 18
9:00 am PST / 10:00 am MST / 11:00 am CST / 12:00 pm EST
 
This is a meet and greet session for parents who have adults children with a disorder of the corpus callosum. Register here.

Teens with DCC
Saturday, September 18
11:00 am PST / 12:00 pm MST / 1:00 pm CST / 2:00 pm EST

This virtual session is for teens ages 13-17 who have a disorder of the corpus callosum. This call will include discussion about going back to school(concerns & how to have a successful year!). Dr. Ashley Vaillancourt will facilitate. Register here.
Adults with DCC
Saturday, September 18
1:00 pm PST / 2:00 pm MST / 3:00 pm CST / 4:00 pm EST
 
This session for adults will focus on Communication Part 2: social cues and how carry on a natural conversation. Topics include knowing when it’s your turn to speak, remembering to ask about others, appropriate questions, closing out conversations, and more. Register here.

Regional Gathering

Region 1 Gathering
Region One Families will be pleased to know that a one-day conference has been rescheduled scheduled for November 13, 2021. The Courtyard Marriot in Fishkill, New York has been chosen as this year's venue. The November 2021 event is being hosted by Jamie Taylor, Jackie Harbison and Lisa Maletzky.  

Included in the itinerary are discussions regarding corpus callosum disorders, education and therapy, neurology, psychology, life planning and many other topics. As always, there will be plenty of time to commiserate with old friends and meet new people as well. Coffee and lunch are included in the price and childcare will be provided. If you wish to join us on this wonderful day, the price is $35.00 for adults and $30.00 for children 12 years old and younger. Not only is this a wonderful opportunity to get to know others whose lives are affected by corpus callosum disorders, but also to meet people in communities that are close to you.  

Region one consists of New York, New Jersey, Connecticut, New Hampshire, Vermont, Rhode Island, Massachusetts and Maine. People from Pennsylvania and Eastern Canada are welcome as well, and anyone else who wishes to attend. For more information about this event please visit our Facebook.com event page: 

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

Pay it Forward with Membership in the NODCC
Our membership drive starts in June, and we can’t wait to show you the new membership perk this year! We’ll unveil it very soon! Membership in the NODCC ensures we can respond to those who have questions and provide information and resources to families and medical professionals.

Watch your mailbox for a letter from the NODCC with membership benefits and forms. If you have not received your membership letter & have moved please, contact Barb at info@nodcc.org so we can confirm your mailing address.

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 click here makes a big difference!

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 to info@nodcc.org


Donate to keep our community thriving!



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