News from the NODCC
A New Bicycle for Emmy through Olam’s Piggybank Grant Program
 
As a little girl Emmy loved to ride her tricycle. When she outgrew the trike, Emmy couldn’t successfully ride a bike (even with training wheels) without the fear of falling. For years, Emmy has watched other kids enjoying time outside riding bikes, but she has been unable to participate.

On the blog, read Emmy’s story and how a new bicycle through Olam’s Piggybank Grant Program has helped Emmy gain independence and get important exercise she needs. https://nodcc.org/blog/
The Final Two Weeks of the 2020 Fall Fundraiser

We are in the final weeks of our 2020 Fall Fundraiser! We are requesting individual contributions online and offline to cover operational expenses and pay for programs and services such as website maintenance, educational materials, medical outreach, and community outreach and response.

There are 3 easy ways to get involved through October 31:
  1. Set up a Facebook Fundraiser to benefit the NODCC: It’s easier than ever to raise money online thanks to platforms like Facebook that incorporate fundraising and donations directly the site. Click on “Fundraisers” from your personal Facebook page menu, click “Select Nonprofit” and search for National Organization for Disorders of the Corpus Callosum.
  2. Join our team and create a personal page on Mighty Cause: Create your own personal fundraising story and page as part of our 2020 Fall Fundraiser Team. Connect to our NODCC team page here. 
  3. Donate directly through nodcc.org/donate: Make donations directly through our website and share the link to others through email or social media to encourage your network to support the organization. All online donations through Oct. 31 will be counted toward the Fall Fundraiser.

For more information, visit our Fundraising page at https://nodcc.org/get-involved/fundraising/.
The Importance of Perspective in Living with DCC
By Timothy Yep

What exactly is Agenesis of the Corpus Callosum (ACC) and how would it define my identity? Would I need to give up my hopes and dreams because of certain limitations and is it possible to overcome the challenges that follow this disability? Those were some of the questions that I’ve struggled with since birth and I’m pretty sure that others with this condition have wondered the same. Currently, I am a 23-year-old working individual who’s been living with cACC since birth and I’ve been spending my entire life answering those questions. Obviously, I still don’t have all the answers I am looking for, however, I am undoubtedly certain that I will get closer if I continue to learn and stay resilient. 

First, acceptance was one of the few things I desperately craved as someone living with cACC. As a child, I’ve always dreamed about having a ‘normal’ life or what that entailed regardless of my disability. I basically wanted a life where I had a ton of friends, played sports, got invited to socials, thrived in school, and so much more. Because of those desires, I was always afraid of disclosing my disability because I couldn’t ever anticipate the reactions, I would receive from people who didn’t understand. There were mixed opinions as this world’s not perfect. But, I soon found out that the ones who accepted me and treated me equally were the true friends I wanted to have for life. It only takes one friend to change your life and I am very fortunate to have that. 

Like others, I’ve also had my fair share of bullying ~ Oh, for sure! I fortunately did not experience any bullying in college, but I’ve been in a few conflicts throughout grade school, especially in high school. Trust me because I certainly understand what others with ACC are going through. I am not going to go into the details, but I’ve basically been called every racist name in the book. You see, back then I was a fourth generation Asian-American living in a town lacking in diversity. Don’t get me wrong. Most individuals in the town were very kind, however, there were still a few unavoidable individuals who didn’t see me as an equal. I was also bullied because of my disability. Certain individuals were degrading my self-worth and intelligence because I was born differently. One thing I’ll say is ~ so what! Just because I was born with a rare disability doesn’t mean I am any less significant than others. People living with ACC or disabilities in general are unique and strong individuals with motivation to show the world what we’re truly made of. Our disabilities provide a distinct perspective, which can be used to change the world into a more acceptable place to live. I have learned to use my disability (cACC) as motivation to self-improve and show others that we can achieve anything if we believe in ourselves. That’s one of the largest lessons I’ve taken away over the years and I hope others will learn as well. 

I started to self-improve when I finally understood the power of observation (i.e social learning). Observation is a powerful tool because it gives us the power of perspective. It taught me more about social cues, nonverbal communication, ethics, behavior, and others that helped me improve. Observation also taught me how to emulate certain behaviors in a mature manner (e.g walking away from a potential fight). These were some ways that helped me overcome certain challenges and I became a lot more cognizant over the years, especially when I started to learn from my mistakes. 

Eventually, the more I learned through experiences and observing, the more prepared I was when I finally had the courage to pursue a career in technology. I currently work at IBM and I participate in recruiting events. One unique quality I can confidently say companies look for is perspective. Companies today thrive off perspective because it provides a different way of thinking. A different way to solve problems that no one else can. That's why most companies welcome people with disabilities and there's no need to worry about our performance because learning is part of the job. No one expects you to know everything off the bat and they will be more than happy to teach you. To be honest, the only way someone with a disability won’t get the job is if they start to doubt themselves before even applying.

Some advice I can also give to parents, friends, siblings, or even teachers is the importance of support. Never give up on those living with ACC because having a disability isn't a curse. It's a gift that we all have yet to discover and support from others will give us the spark we need to aspire towards who we're meant to be; disrupters. Disrupters are people who challenge the status quo and influence positive change.

Without a doubt, these are just some ways that I’ve been trying to overcome cACC and I really hope this has been somewhat helpful to others living with ACC. We all have our own stories to tell and it’s up to us to decide how we want to live them.
Here are the latest opportunities to get involved with the NODCC community.

Regional and Community Gatherings

The NODCC will continue hosting regular virtual gatherings via Zoom. Details, dates, and Zoom links will be shared on our website with reminders on social media (Facebook and Twitter). Please contact community@nodcc.org or info@nodcc.org if yo have any questions or suggestions.

Upcoming Zoom calls include:
November 14 at 2 pm EST
Parents of Adults with DCC
Click HERE for the link to register

November 14 at 4 pm EST
NODCC Siblings 13 & older
Click HERE for the link to register

**After registering, you will receive a confirmation email containing information about joining the meeting.

DCC Conference: Registration for 2021 is now open!

The NODCC is moving forward with plans for the DCC Conference on June 25-27, 2021. Registration opened Friday, September 18 via our website at nodcc.org.
The hotel code for hotel reservations will also be coming soon. We are also pleased to offer payment plan options this year should you be interested in spreading out conference registration fees over the months leading up to the conference. We will offer full refunds should our conference be moved or cancelled. Please contact Barb at info@nodcc.org for more information on the payment plan.
Fundraisers & Donations

New Charitable Tax Deduction
Interested in making a charitable donation to the NODCC? The recent Covid-19 Stimulus Package outlines a new charitable deduction opportunity under the CARES Act for Nonprofits. “The CARES Act allows for an additional, ‘above-the-line’ deduction for charitable gifts made in cash of up to $300. If you are not itemizing on your 2020 taxes, you can claim this new deduction.” Continue reading HERE.
**This information is not intended as legal or tax advice. For such advice, please consult an attorney or tax advisor.

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