My sister Anna was born with a very rare genetic disorder called Alagille Syndrome (ALGS). There are only about 8,000 cases of ALGS in the United States and only a couple of hospitals that treat it.
For the past two years, Anna has challenged her friends to perform Rare Acts of Kindness in honor of Rare Disease Day.
I am honored to let her take over my blog this week to spread the word about this event and celebrate rare people everywhere!
It’s almost Rare Disease Day 2017, everyone!
This year’s theme is With Research Possibilities are Limitless, which focuses on the importance of research for those affected by rare diseases.
Living with a rare disease means that you are often left with a lot of uncertainty. After a long, hard journey to a diagnosis, we are often left with more questions and less answers.
Is there a cure?
Are there treatment options?
What does the road ahead look like?
What is my prognosis?
As someone with a rare disease, you learn all the ways that doctors say “we don’t know”: “it’s too soon to tell,” “we’re looking for an answer,” “let’s focus on this for now,” “we’ll see how things go and continue on from there,” and “we aren’t sure.”
These phrases never get easier to hear. It’s an incredibly frustrating and helpless feeling.
This is why research is vital. Research takes the “we don’t know” and changes it to “we are learning…”
What might seem like just a slight turn of phrase, is actually a much needed glimmer of hope for someone with a rare disease.
For my rare disease, Alagille Syndrome, research has discovered new genetic markers for ALGS and drug trials that are greatly improving the quality of life for young ALGS warriors.
Research leads to knowledge, knowledge leads to treatments, treatments and knowledge leads to cures.
Research means hope.
For the past two years, I have asked you to join me, my family and friends in celebrating Rare Disease Day with Rare Acts of Kindness. We have been overwhelmed by how many people have joined us!
This year, let’s spread the hope and joy in our local communities. Give someone a reason to smile and share the love for people with rare diseases!
HOW TO PARTICIPATE:
From February 24 – 28, 2017, perform an act of kindness in your community.
Make sure you snap a photo and share it online with the hashtags #RareActsOfKindness and #RareDiseaseDay so that we can see how everyone is participating!
To make things even easier, we’ve designed printable cards to share with your #RareActsOfKindness recipients. Click here to print your #RareActsOfKindness cards.
For ideas of ways to celebrate and to connect with other rare people and the folks who love them, make sure you join our facebook event!
NEW THIS YEAR: LuLaRoe Fundraiser to benefit the Alagille Syndrome Alliance
Eight phenomenal LLR consultants have teamed up to do a HUGE multi-consultant sale and donate a portion of the proceeds to the Alagille Syndrome Alliance!
There will be hundreds of gorgeous items in a wide range of styles, prints and sizes. This is the perfect opportunity to snag an adorable Easter dress or some new leggings, all while helping support a cause near and dear to our hearts.
As always, thank you for participating and helping us celebrate Rare Disease Day!