Family Highlight

Meet the Pace Family: 
James, Dawn, Bryanna (14), Zachary (8.5) 
of Rome, NY

Like many of our ACC families, Jim and Dawn Pace were advised at their 20 week sonogram that their unborn son had a possible condition called Agenesis of the Corpus Callosum.  Two weeks later the diagnosis was confirmed via MRI as Complete ACC.  

  • How would you describe your feelings and thoughts when your son received this diagnosis?
    • Scared to death! We immediately went online to search for anything to do with ACC and we were overwhelmed with all the "unknowns".  I was trying to figure out if it was something I caused during my pregnancy. Since our son's ventricles were enlarged, my biggest concern was what his head would look like when he was born.  I had terrible images in my mind. Our son was born in June 2011 via planned C-Section at 38.5 weeks, and I kept asking my husband what he looked like. With the biggest smile on his face he said, "He is perfect!".  We were relieved to know there were services available to help Zachary, and he started early intervention right away.
  • What have been the most challenging aspects for you and your ACC child?
    • Development delays and epilepsy.  Our son Zach's delays for the first 3 years ranged from about 6 months to a year behind neuro-typical children.  Each year that goes by, the gap seems to be increasing. Our son is 8.5 years old, and a recent school observation stated he was at a 3-year old level.  We believe Zach started having absent seizures around 3 years old but didn't realize what they were until he had a grand mal seizure at age 6.5. Our neurologist explained that the "zoning" we saw our son doing were most likely seizures.  Another MRI in 2019 confirmed that Zach has a second brain disorder - Band Heterotopia. With uncontrolled epilepsy comes trial and error with different anti-seizure meds and their side effects.
  • What have been the most rewarding aspects of your ACC journey so far?
    • The ACC and other support groups have been our life line.  Knowing we are not alone and being able to exchange our frustrations and expe riences with those that "totally get it!" has made our daily life more manageable.  As a family, we are learning to be more patient and understanding of Zach's needs. We appreciate and celebrate the small milestones. We take one day at a time!
Brain Awareness Week: A World Movement
By Lisa Maletzky

This year's Brain Awareness Week celebration is set for March 16th through the  22nd. Brain Awareness Week began in 1996 as an international, week-long campaign  by the Dana Foundation and groups with varying interests in this field. The idea was, and continues to be, the promotion and acceptance of scientific research and study of  the brain. During this week of brain recognition, we can see communities around the  world hosting events that foster learning and education of the critical role the brain plays in controlling every part of our lives. The events also draw attention to the  advancement, knowledge of and the acceptance of brain trauma and disorders. Brainawarenessweek.org states, "In the 24 years since its founding, Brain Awareness  Week has evolved into a global education initiative that included the participation of  more than 7,300 partners in 711 countries. 

During the 2019 campaign alone, more than 2,500 partner events were held in 50 countries and 45 states."Brain Awareness Week is promoted and celebrated in varying ways. According to the Dana Foundation, at brainawarenessweek.org, every event is different in that each organization promotes their own interests, or works with groups that have similar goals, to spread the word about brain awareness. Some of these experiences include lectures that educate about multitudes of brain disorders, while also focusing on scientific and medical research. Other examples of discussions include, or focus on, the structure and function of the brain as humans progress in age. Some organizations remain steadfast, in not only the education of, but also the exercise of raising money to fund research and promote further study of the brain to help those they represent. No matter which way a group decides to participate in Brain Awareness Week, the primary purpose remains, and always will, to educate, spread awareness and to inspire hope for us all. 

Phil Nast explains that, "BAW is a worldwide celebration of the brain for people of all ages. Organizations have no limits when it comes to how creative they can be when  sharing their message with the world. From lectures to lab tours, and hands-on  activities, to musical events and art symposiums, there is something for every interest  and ways for everyone to get involved. Events can be found by searching the internet
and social media. Online, you can find everything from outreach programs to exciting  competitions like the, "Turkish Brain Bee," and other exhilarating activities for Brain  Awareness Week all over the globe. 

The future of Brain Awareness Week is limitless. As more and more organizations get involved, the message reaches more of the masses. The hope for the present, and the future, is to educate all people about the wonderment that is the human brain. Groups hope to continue to conduct research and outreach to let those who suffer from a brain injury, or who have a neurological disability, know they are not alone and continue to feel supported. 

The National Organization for Disorders of the Corpus Callosum is just one of the many groups that promotes brain awareness by teaching and supporting families with a loved one who has a corpus callosum disorder. There are hundreds of others who share in the goals of the NODCC, in their efforts to raise awareness of brain function, trauma, disorders and hope for the future.

This year, for Brain Awareness Week, I encourage you to get involved in events in  your area, read news updates and participate in weekly challenges on twitter  @NODCCorg. For more information about Corpus Callosum Disorders and support for  families, please visit The National Organization for Disorders of the Corpus Callosum at  www.nodcc.org. For more information about Brain Awareness Week, please visit
www.Brainawareness.org or The Dana Foundation at www.dana.org. You can also find  events and general information at the Society for Neuroscience at www.sfn.org .


NODCC Neighborhood Zoom Calls


We will host our first NODCC Neighborhood calls next week during Brain Awareness Week. These online regional gatherings allow for our DCC community to get to know each other, share common experiences, and offer encouragement and support. This is a great opportunity for those who cannot travel to national conferences or regional gatherings to help everyone stay connected to our DCC community.
 
On Thursday, March 19, click on the link for your state or nearest region during the scheduled time. Each regional call will last one hour or less. Zoom is free and easy to use and allows you to see and talk to others.  All you need is a device with audio and camera capabilities. We hope you will join us on Thursday to meet others in your neighborhood, state, or region.
 
 
 
 
 
 
 
Conference Registration is Open!
Online registration for the 2020 DCC Conference opens on February 24. Conference details, schedule and child/teen program information are posted on the site including the group code for hotel reservations.

To register for the conference online, you will need to be a registered user of the site (see above).
We hope you will browse the conference details and join us in Texas this summer!

If you have any questions regarding site registration or conference registration, please email Barb at conference@nodcc.org

As the COVID-19 situation evolves globally, we are monitoring the developments and will make the best decision for our community. As of now, we are working toward our 2020 DCC Conference at the end of June. Should changes need to be made to our plans, we will make the decision by the end of April or sooner if we are advised to do so. We take the responsibility of hosting a conference and gathering our community very seriously, and we will provide updates in the coming days.


 Events, Gatherings & Fundraisers

REGIONAL EVENTS:

As the summer draws near, the excitement continues to build around the National Organization for Disorders of the Corpus Callosum's National Conference in Texas.  For many families, this is a chance to meet people from across the country, hear lectures, and gain support. Some families, however, are unable to attend, or feel the need for more support after the National Conference has passed.  For them, the regional conferences, endorsed by the NODCC, are met with just as much anticipation. Each region plans its own meetups, and many are in the summer as well.

If you are interested in putting together a gathering in your area, contact Barbara at info@noddc.orgGatherings can be as simple as hosting families in your home or a nearby business. Or the gathering can be a day-long mini-conference style event.

NODCC Charity Golf Tournament
Tennessee Area Folks: Join us for the 2nd Annual Charity Golf Tournament at the Dixie Oaks Golf Course in Summertown, Tennessee on Saturday, May 30. The deadline for registration is May 16. Click HERE to view the brochure and learn more about the tournament.

We would love to see you there!

Region 1 Gathering
Region One Families will be pleased to know that the one-day conference has been scheduled for August 1 st , 2020.  The Courtyard Marriot in Fishkill, New York has been chosen as this year's venue.  The August 2020 event is being hosted by Jamie Taylor, Jackie Harbison and Lisa Maletzky. If you have questions please contact Lisa at lisazblues@hotmail.com

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 $45.00 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: 
New NODCC Website
We have a new website!! The website went live this week providing updated content, better organized menu navigation and the ability to easily make changes to the site. New images and graphics along with additional content will be added in the coming weeks.

Everyone is invited to become a free, registered user of the site and part of the NODCC community. As a registered user, you join our NODCC Directory and can connect with people around the world or who live near you. Even if you have registered in the past, you will need to register on the new site.

 
News From the NODCC Office & Board of Directors
Giving to the NODCC:
Did you know that your regular Amazon purchases can help raise money for the NODCC? It's a donation opportunity provided through  AmazonSmile. So far this calendar year, the NODCC has received a quarterly donation of $615.29. This is simply from normal Amazon purchases! To date, AmazonSmile has donated $3,423.00 to the NODCC, which is a fraction of the $124,651,081.04 Amazon has donated to all charities. 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 a candidate sponsor or global partner. We encourage all readers of this article to send candidate sponsor company names or potential company contact information to  info@nodcc.org.