Rare Champion of hope nominee Amanda Ripsam for 22q advocacy

I am honored to be a nominee for the rare champions of hope

My husband Adam and I

My husband Adam and I

I am honored to be a nominee for the rare champions of hope. Hundreds of individuals and organizations worldwide were nominated by their peers for the 2017 RARE Champion of Hope awards to honor their notable efforts in rare disease advocacy, science, collaborative sciences, and medical care and treatment. Please see the full list of nominees and a map demonstrating the various locations of those nominated below.  The purpose of the Tribute to Champions of Hope is to recognize those who are uniquely attacking the challenges they face in the fight against rare disease; those who are thinking outside of the box and working tirelessly, not focusing on what was, but setting their sites on what can/will be. 

I have always been focused on the what I can do vers what I can't do as an adult and mom who has 22q and raising my own child with 22q11.2 deletion syndrome. I also have a father and three siblings one of my siblings a half brother passed away at the age of 6.  In total there are 6 of us with 22q in our family. I bring all kinds of perspectives and that's where my passion lies in honor of my brother quietly of course and in providing hope for my daughter. I share my story here on my website and have blogged since 2014 since I started blogging there have been so many other 22q people who have also wanted to blog and some people even want to do all that Bella and I can do. At first, it was not easy doing the research talking to doctors hunting down specialist but I did it and now my daughter is 10 and I'm trained and ready to speak out and up for this disorder that is unheard of so often way too often by er doctors nurses and teachers.  The people who interact with my daughter all are aware of 22q and that made me have the desire to spread awareness the old fashion grass roots way of word of mouth to everyone and anyone I can.  My passion is why I am honored to be one of your nominees to share my story if i can not attend I would love if everyone who hears about me and my story to subscribe to my blog so I know how many are out there who want to hear my story.

2016 Tribute to Champions of Hope Recap

The 5th Annual Tribute to Champions of Hope was host to 670 attendees and 27 honorees. The night will be remembered for its courageous honorees, touching acceptance speeches, and amazing performances. 

I am in the black top Bella is in the one in the red 22q hat and Adam hubby is in yellow. We are standing with friends for a picture from last years 22q at the zoo in Grand Rapids Michigan we had a small but mighty group spreading awareness

I am in the black top Bella is in the one in the red 22q hat and Adam hubby is in yellow. We are standing with friends for a picture from last years 22q at the zoo in Grand Rapids Michigan we had a small but mighty group spreading awareness

The link below shares the list of others who have also been nominated.  This is a huge honor and I thank everyone who voted to get me here.

I also thank every single blog subscriber and everyone who has been supportive of our journey.

Love Amanda Ripsam and Family

https://globalgenes.org/2017nominees/

 

22q at the zoo Grand Rapids Michigan 22q-awareness day

Hello everyone,

It is almost that time of year again. 22q at the zoo event 

Every year around the world people who have 22q get together both adults and children can have 22q and family's gather to connect with each other.

In Michigan, there was three events, Detroit, Grand Rapids and Ann Arbor. Our family lives near Grand Rapids in Otsego, and we used to live in Grand Rapids, in fact, Bella was born at Hellen Devos Children's hospital that is why we decided to attend the Grand Rapids Michigan zoo.  Back when I lived in Grand Rapids, I couldn't find anyone else close by to form a support groupBack a few years ago not as many families in Michigan were being diagnosed with having 22q.  I didn't know any other family's who had 22q or a child with 22q in Michigan let alone the area where we used to live.

 

In Grand Rapids, we met at John Ball Zoo outside in the picnic area.  Our family has been to John Ball Zoo a few times for field trips and family fun days, so we decided not to go inside the zoo since we been there done that. Our family after meeting and chatting with everyone for a few hours went to Craig's Cruisers instead after we met and talked with everyone for a few hours. I was very excited because I got to meet two ladies who I had talked with online before in a Michigan support group and had a great time getting to know another woman as well. I'm leaving names out for privacy reasons. But I will show the pictures. Ibelieve pictures say a thousand words. My husband is in the photo behind Bella and me decided to pose a picture with one of the ladies I met.

Words can no describe how everyone is feeling so I think ending the post with some pictures from 22q at the Zoo can express part of how well all of us connected with one another over a common bond.