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Traveling to #taiwan and hosting a meet-up for AADC deficiency caregivers was an honor and joy. Making memories with families who had similar stories helped us. We look forward to sharing each family's story from our interviews. Please review the highlights from this wonderful event.

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AADC Caregiver Meet-Up in Taiwan

Parents of AADC deficiency children met in Taiwan to eat food, share stories, and exchange tips. The goal is to provide free education for parents on...

teachrare.org

Rylae couldn’t move before gene therapy. Her dad had to act as a puppeteer to encourage her. She started moving her little fingers when she saw the lights turned on! #specialneedsfamily #aadcdeficiency

This is the first video, Week 1, in our series about home therapy.

We begin with a circle time. This builds a routine and helps to start our activities. We then go through 4 exercises. You could do each exercise 3 times or each of them one time and repeat the circuit. Whichever works best ...for you and your child.

Adapt the exercises to meet your comfort zone and your child’s ability. Complete it at least once a day for each week. You can make it easier or more difficult depending on the day.

The most important thing is to play and make memories.

OK, LET’S PLAY AND MAKE MEMORIES <3

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Home Therapy Lesson - Week 1

This is the first video, Week 1, in our series about home therapy.We begin with a circle time. This builds a routine and helps to start our...

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We combined learning music and patterns while working on #occupationaltherapy skills. We started by being puppeteers by moving Rylae’s finger. Gradually she became independent so we taped Rylae’s fingers to help use her pointer finger. #specialneeds #musictherapy #earlyinterventiontherapy

We combined learning music and patterns while working on #occupationaltherapy skills. We started by being puppeteers by moving Rylae’s finger. Gradually she became independent so we taped Rylae’s fingers to help use her pointer finger. #specialneeds #musictherapy #earlyinterventiontherapy

Rylae-Ann made her for few steps at 3 year old in front the camera before her great grandmother passed away. GG never got to meet Rylae in person but we know she is looking down on her. Thank you GG for cheering Rylae on!! #greatgrandma #firststeps #aadcdeficiency

We stay optimistic and associate with the people and organizations that support us. However, there are many that do not. It can be very demotivating and painful trying to escape exclusion:

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The Most Difficult Barrier Rare Disease Families Face

Rare disease and special needs families face many challenges and over time they learn to overcome them. However, this is the most difficult barrier...

teachrare.org