Taking our message to Washington, in comfy shoes

There is nothing more empowering, in my opinion, than walking the halls of Congress, bringing your message to the nation’s leaders. I’ve had the honor of doing that for the CdLS Foundation a handful of times over the past two years. During that time, I’ve figured out the Metro (the city’s subway system), mastered the Congressional buildings’ foot tunnels, and learned early on that high heels are a very bad choice when trekking across miles of marble floors. 

Yesterday, I was in Washington, DC, again — this time on behalf of all people affected by genetic conditions. I was part of a group of more than 100 advocates participating in the second annual Genetics Day on the Hill, sponsored by the Genetic Alliance.

We were in Washington, DC, to talk about genetic discrimination and genetic testing standards.  In addition to advancing federal policies to protect people with genetic conditions, the visits gave everyone the opportunity to raise awareness of the syndrome/disease they represented.

Armed with comfortable shoes and a lot of caffeine, I co-led a group of fellow New Englanders to meetings in 10 Senate offices. My group consisted of parents, patients and professionals representing Hermansky-Pudlak Syndrome, Parent Project Muscular Dystrophy, the Northeast support group for Velo-Cardio-Facial Syndrome, and the Rhode Island Dept. of Health. Our group shared plenty of enthusiasm, some laughter and even a few tears along the way.

I was humbled by the courage and passion of the people with whom I spent my day. I hope that the Congressional offices we visited were left with the same impression. –MM

Welcome to Connecticut, Hiker Jim

We were thrilled to meet Hiker Jim last night as he made his way through Connecticut. As some of you know from previous posts here, Jim has been hiking the Appalachian Trail and raising money ($2,000 to date) and awareness for the Foundation along the way.

Several staff members were able to get together with Jim, his hiking partners and his hosts for the past few nights in Lakeville, CT. In addition to meeting Jim for the first time, we celebrated his recent birthday with carrot cake (his favorite) and a champagne toast.

While he was here, we also put Jim to work doing interviews with local newspapers, including the Hartford Courant. You can read the articles in our Press Room: http://www.cdlsusa.org/news/press_room.shtml. -MM

Blogs we like (and we hope you will too)

We’re not the only ones who have a blog dedicated to CdLS. There are several parents documenting the daily joys and struggles of raising their child with CdLS while balancing work, home and family. Here are a few we’d like to share:

 

■        Ben and his brothers: Life with three boys and CdLS – The title of this blog says it all. This working mom of three young boys documents the trials and tribulations of trips to the pediatrician’s office, soccer games and her husband’s cooking. (Be sure to check out his blog too: Mark Ruins Dinner.)

■        It’s the Little Things – In addition to raising David (CdLS) and Matty, this mom finds time to make jewelry. In celebration of David’s fifth birthday, she’s selling a special necklace and giving a portion of the proceeds to the Foundation.

We hope you enjoying “peeking” into the lives of these families. If there’s a blog you’d like to share, let us know. –MM

  

A place just for grandparents

The CdLS Connects Grandparents Bulletin Board—an online forum for grandparents of children with CdLS—is up and running.

Grandparents play an important role in their child’s and grandchild’s lives—and they can also be a great resource for each other. Once registered for the bulletin board, users can post their questions or concerns and share their wisdom with the group. Topics so far include How to talk about your grandchild, Questioning the diagnosis – why me? and Balancing the needs of the whole family.

We hope bulletin board participants will reach out to each other and make the CdLS journey a little smoother. Grandparents can go to CdLS Connects Grandparents Bulletin Board (http://www.cdlsusa.org/grandparents.shtml) to learn more and register. –MM

Hiker Jim: 1,500 more miles to go for CdLS

Just a quick update on Hiker Jim, the Georgia man walking the Appalachian Trail raising awareness and money for the Foundation along the way (more than $1,000 to date).

 

Jim started his journey—dubbed Walk for Alley in honor of a little girl with CdLS in his hometown—in February. He had a string of bad luck at first and had to leave the trail twice for family emergencies. But, Jim didn’t give up on his dream. He is currently making his way through Virginia, having gone more than a quarter of the 2,175-mile trail, which goes from Georgia to Maine. In the process, he’s done a great job of spreading the word about CdLS. Here’s a heartwarming story from one of his trail log entries:

 

11 March 2007: “I arose early and requested a shuttle from Tina, theFontana Village Shuttle Driver the next morning at 7. Because of the Daylight Savings time change that evening, I was 10 minutes late for my shuttle ride and had to wait until 7:20 for a pickup. I am sometimes amazed how things work out and this is just such a situation. When I got in the van and loaded my pack and staff, Tina noticed my “Walking for Alley” shirt and asked about it. I told her about Cornelia de Lange Syndrome and its effects on children. As I did this, Tina reached for her tip cup and handed me all the money she had collected that morning for her shuttle services. She said that she had a daughter who was afflicted with another rare childhood disease and understood what CdLS families were experiencing. I graciously accepted her gift and told her that it would be much appreciated by the Foundation in Connecticut.  I was humbled by this wonderful lady’s generosity and her willingness to give what little she had to the cause. It also raised my spirits that day and carried me across the Fontana Dam into my first day in the Great Smokey Mountain National Park that day”.

Safe travels Jim. -MM