October 2020
CdLS Foundation UK & Ireland: CdLS Autumn Virtual Conference
The CdLS Foundation of UK & Ireland is unable to hold physical, in-person conference this year, they are offering a virtual conference experience instead. They will have keynote presentations followed by live Q&A sessions after each, where you get to ask specific questions of our experts. With some familiar speakers and a new face or two, they aim to provide the same quality information but tailored to what you, our families, wanted us to focus on. Click here to see…
Find out more »November 2020
Virtual Multidisciplinary Clinic For Adolescents And Adults
This Foundation-managed, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore, MD. Foundation Medical Director Antonie Kline, M.D., director of Pediatric Genetics at the Harvey Institute for Human Genetics at GBMC, has led these free clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. This year the clinic will be virtual. Presentations on the following topics from CdLS Clinical Advisory Board members: Behavioral Psychology, Child Psychiatry, Gastroenterology, Genetics, Gynecology,…
Find out more »Parent University: Progress Report / Goal Setting Time
A look at how the small steps you started out with this year are adding up to real progress in planning for your family’s future and to set your goals for the next year.
Find out more »January 2021
Protected Tomorrows, Parent University: New Year, New Resolution… Keeping Your Life Care Plan Moving Forward
The key to a more secure fulfilling future is blending realism with hope. That takes knowledge, but also a willingness to learn about the many tools and techniques to help you get started. We will work together to identify the goals you want to achieve and the dangers you will want to avoid, along with building your team of professionals/caretakers to help you along the way.
Find out more »February 2021
Stimulus Payment and More Q&A: Get Your IL ABLE, SSI Impact and Other ABLE Questions Answered
Special Olympics Illinois in conjunction with IL ABLE and Protected Tomorrows will be hosting a webinar for families and providers entitled, "Stimulus Payment and More Q&A: Get Your IL ABLE, SSI Impact and Other ABLE Questions Answered" on Wednesday, February 10, 2021 from 12:00pm - 1:00pm CST. Protected Tomorrows and IL ABLE will be guest presenters. Please note, this webinar will be recorded. All registered participants will receive the information needed to watch the recorded video. If you are unable…
Find out more »A Day of Remembrance
Losing a loved one with CdLS at any age can be life-altering. Parents, siblings, relatives and friends feel tremendous loss and many times have a difficult time understanding why. It is so important that we as a community surround them with support and unconditional love. Although they have lost their child, grandchild or sibling – they still belong and will forever be part of our journey. On February 12th, we will be celebrating CdLS Remembrance Day. We ask that our…
Find out more »Lights of Love for our CdLS Angels
February 12th is CdLS Remembrance Day, we ask everyone, everywhere, to light a candle in remembrance of each and every one of our loved ones who are no longer with us. Sadly, more of individuals with CdLS have gained their wings in the past year, and we want to use this worldwide event to recognize and honor them. Visit the Lights of Love Facebook page
Find out more »Protected Tomorrows, Parent University: How to Fund Now for Peace of Mind Later
We will work through the vision of what you would hope to achieve for the future, the basic information you will need to gather now to be ready to take the next steps, and the details that are so important for your future plan. We will discuss information about retirement planning, the ABLE account, and tying together government benefits, insurance and investments.
Find out more »Choosing Resiliency in the Face of Adversity
How do we process an unexpected, life-altering event or circumstance? How do our choices and decisions have bearing on the outcome? Join CPN’s Blyth Taylor Lord and Facebook COO Sheryl Sandberg for a candid discussion of how these experiences shape us, and how to move forward with maximum healing and minimal regret. This event is hosted by National Tay-Sachs and Allied Diseases as part of their Family Connection Webinar Series. REGISTER for Choosing Resiliency
Find out more »Rare Disease Day
Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. There are so many different ways to get involved on Rare Disease Day!
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