We know this time of year can be bittersweet for many families as the school year begins - a reminder of the milestones that are missed and those that will be missed. We want to take this time to say, "We see you and we're with you." As the dog days of summer begin to wind down, here are some photos of summers, past and present, to hopefully look back on with a smile.
NTSAD's new vice president, Oralea Marquardt, wrote about this time of year for Courageous Parents Network when her son, William, would have been entering 4th grade. This year, William would have been in the 9th grade. You can read the full article here.
- Break large tasks into small ones, set some priorities, and do what you can as you can.
- Try to be with other people and to confide in someone you know and trust; it is often better than suffering alone.
- Participate in activities that may make you feel better, such as exercise, going to a movie or ballgame, or attending a religious, social, or community event.
- Expect your mood to improve gradually, not immediately. Feeling better takes time.
- It is advisable to postpone important decisions until the depression has lifted. Before deciding to make a significant transition—change jobs, get married or divorced—discuss it with others who know you well and can offer another view of your situation.
- People rarely "snap out of" a depression. People who expect you to do this are misguided in their understanding of your condition.
- Remember, positive thinking and the practice of new coping patterns will replace the negative thinking that is part of the depression. The negative thinking will be reduced as your depression responds to treatment.
- Say “yes” to offers of help and engagement by family and friends who you know and trust.
- Direct assistance in providing care for your loved one, such as respite care relief, as well as positive feedback from others, positive self-talk, and recreational activities are linked to lower levels of depression.
Read the full article from the FCA newsletter here.
Benton's Family Assistance Fund and Emma's Fund for Families are two funds within NTSAD that are there to provide families with help with equipment, caregiver help, a weekend away, a photography session, and more. Be sure to check it out as they are both additional strategies to help your family.
Canavan Natural History Study and
Medical Record Retrieval
Aspa Therapeutics will soon be launching their comprehensive natural history study, CAN-Inform. The more data they collect from families, the better for the trial, and other future treatment trials. They ask for Canavan families who have or have had a child with the disease to participate. It is enormously helpful to have several years of data for a child so we hope all families - younger and older - will participate.
GM1 Natural History Study
University of Pennsylvania and Passage Bio are sponsoring a new natural history study focused on infantile and juvenile GM1 Gangliosidosis.
The data gleaned from the study will inform future trials and help to determine clinical endpoints that will show if a therapy is working.
The study is not yet recruiting but to learn more about the two sites and the contact information in the U.S. and the U.K. visit here.