News from the NODCC

New Year, New View - How Words Can Establish a Hopeful Mindset for 2023

By Miriam Bernard


Happy January! This month certainly brings its own unique tone, doesn't it? Not only is it the quiet month that follows the busyness of the holidays, but it ushers in a new calendar year, which for many is a chance to contemplate new beginnings, goals, and intentions. As we kick off 2023, sometimes the unknowns and possibilities hiding in the nooks and crannies of a fresh new calendar can feel daunting. What will become of this year? Will it hold success or setbacks? Some of the answer to that question is up to us and the attitude we adopt heading into a new year.


Even though a few weeks of January have already transpired, we'd like to encourage you to set purpose for your year, whether it be small and focused, or grand and sweeping. It's well known that many people select New Year Resolutions during this season, but an increasingly popular choice is selecting one or more "Words of the Year" that guide your purpose or motivation. Especially if you or a family member has the added life challenges and joys that a DCC brings, words of intention can serve as a grounding tool to make this year one of your best yet. 


In the past few weeks, a few of our DCC community members have chimed in on words and goals they're using to glean inspiration, and we wanted to share them in hopes of lighting a spark of excitement for all that is to come for you in 2023.


Dennie L. selected "Commitment", "Confidence" and "Thrive", and we couldn't agree more that the combo of these three will provide excellent inspiration.


Bridget R. is going into the year focusing on "Creativity" and "Wellness", which sound like the makings of a excellent year.


Perry P's word this year will be "THRIVE", specifically expressed in all caps, which is a touch we like!.


Sarah M. has chosen the words "Kindness", "Quiet Quitting", "Health", and "Acceptance". She also shared with us her goals this year, which include college, finding a new job, self-employment, getting better, spreading kindness, and learning more about herself. Commendable goals, Sarah!


Angie M. selected several words for this year, including "Confidence", "Creativity", "Thrive", "Calm", "Laugh", and "Wellness". We hope for all these things for you, Angie.


Even if you find the start of the year to be nothing but an arbitrary concept,research shows that goal-setting, focusing on specific positive words, and taking part in positive affirmations have a optimistic effect on self-view and goal achievement. This means that even if you're not a "New Year, New You" sort of person, we all can benefit from pausing in the midst of the chaos, thinking about what invigorates us, and placing some specific intention on 2023. If you'd like a little boost, here is a list of words from our recent NODCC Facebook post that may serve as a proper "Word of the Year" for you!


Anti-Grind, Balance, Authentic, Abundance, Commitment, Bloom, Courage, Declutter, Confidence, Devotion, Persistance, Organized, Simplicity, Delight, Embrace, Enjoy, Growth, Reset, Thrive, Creativity, Calm, Trust, Fitness, Friendship, Automation, Empowerment, Efficiency, Mindful, Nurture, Laugh, Move, Wellness


Whether you se


lect a "Word of the Year" or not, set goals or not, we hope 2023 holds nothing but happy days for you and your loved ones. Happy New Year from the NODCC!




Hiking Thru Hydrocephalus – Michael Denlinger’s Adventure on the Appalachian Trail

By Miriam Bernard


To some people, NODCC community member Michael Denlinger is known only as “Hydro”. This is because every one of the roughly 3,000 individuals who take on the monstrous task of hiking the entire Appalachian Trail is given a “trail name”, and that is how they introduce themselves to anyone they meet during the six-month trek along 2,000+ mile trail, winding its way through 14 states.  25-year-old Michael, originally from Charlotte, North Carolina happened upon a brewery in his hometown that was inspired by the trail, and he happened to meet a few people that had accomplished the massive through hike. This led him to read the book “The Unlikely Thry-Hiker” by Derick Lugo, which inspired him to begin saving up to complete the trek himself.


Michael has C-ACC and Hydrocephalus. He had always known about the hydrocephalus, but it wasn’t until middle school that he really noticed that he had ACC. It was pretty tough academically and socially, and he attended seven different schools trying to find the right fit. Eventually, it worked best graduating from high school online. 


Michael’s trail name, Hydro, came partially from his hydrocephalus, but also because of the excessive amount of water he carried at the start of his Appalachian Trail journey. What surprised him most on the trail was how many people were also hiking the trail. In the beginning, there were people at every campsite and he would see people all the time. However, the farther up he went, it grew less and less crowded. 


Mentally his biggest challenge was being extremely unorganized. He lost a great deal of gear that he had to keep replacing. He grew somewhat better at managing his belongings as time went on. Physically, Michael states the most challenging part of the trek were the White Mountains in New Hampshire. However, he’s quick to add he enjoyed every second of traveling through them. 


Hydro claims the most difficult part was the fear of the unknown. He had always had a tough time with “change”, but on the trail, every day was completely different from the last, and required adapting quickly to new difficulties. This was an exercise in patience and acclimation. Now, looking at the experience from the other side, Michael is sold. He was a barista in his pre-thru-hiker life, but now he has selected a job that allows him time for more adventures without needing to ask for time off or quit any jobs: driving for Uber. He calls his traversing the entirety of the Appalchian Trail the “best experience of his life” and would say he recommends it for anyone. He’s already planning his next major thru-hike: the Pacific Crest Trail from The Mexico border all the way to the Canadian border. Michael Denlinger is living proof that ACC and Hydrocephalus don’t have to be hindrances, but can be catalysts for chasing huge dreams that turn into epic, life-altering memories. Congrats, Michael, on this massive achievement, and we can’t wait to catch up with you when you’ve completed the Pacific Crest Trail!


A few awe-inspiring facts about the Appalachian Trail Trek:

·  It takes roughly 5 million steps to hike the entire A.T. 

·  The total elevation gain of hiking the entire A.T. is equivalent to climbing Mt. Everest 16 times. 

·  Thousands of volunteers contribute roughly 240,000 hours to the A.T. every year. 

·  More than 250 three-sided shelters exist along the Trail. 

·  Virginia is home to the most miles of the Trail (about 550), while West Virginia is home to the least (about 4). 

·  Maryland and West Virginia are the easiest states to hike; New Hampshire and Maine are the hardest. 


New Research Opportunity


Drs. Warren Brown and Lynn Paul and the Human Brain & Cognition Laboratory at the Fuller Graduate School of Psychology are seeking adults with agenesis of the corpus callosum who are interested in participating in several new research studies. 


Participants will be asked to complete an initial screening process involving a review of relevant medical and personal information, as well as some brief (<30 minutes) cognitive testing over the phone. Participants will then be invited to complete 4 brief studies online involving topics such as music, art, and decision making. Participants will receive $20 upon completion of all 4 studies, or a lesser sum for completion of each individual study. These studies are done in collaboration with Dr. Paul’s lab at Caltech and other NODCC research groups.


If you are interested in participating in these studies, or would like to learn more about the research, please send an email to the lab at neuropsych5@fuller.edu indicating your interest and/or questions. More information can also be found on our laboratory website– https://www.fuller.edu/academics/school-of-psychology/travis-research-institute/human-brain-and-cognition-brown-lab/

We Want to Hear From You! 

Love with a DCC:

We want to know your or your family members' stories of finding love with a DCC. How has it presented challenges? Has it made romance easier, more difficult, extra special or unique? Share your sappiest and most warm, fuzzy love stories with us, and we may reach out to share your story in our February eBlast, just in time for Valentine's Day! Please email us at: communication@nodcc.org

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

Connecting our DCC Community through Virtual Sessions

February 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!


Expectant Parents and Parents of Newborns with a DCC

February 25, 2023

11:00 pm PST / 12:00 pm MST/

1:00 pm CST / 2:00 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. 

Register Here


Grandparents of the NODCC

February 25, 2023

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.

Register Here


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

Fundraisers & Donations


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.


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.

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 to info@nodcc.org


Donate to keep our community thriving!

DONATE



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