This is becoming one of my favorite times of the year to be a bleeding disorders advocate. It’s the time of year when individuals of all ages come together to raise crucial money for the community by participating in walks and bike rides across the country.
In 2011, HFA hosted its first annual Gears for Good Bike ride from West Virginia to D.C., to help raise awareness about bleeding disorders, all while raising funds for HFA’s financial assistance program, Helping Hands. Each year, more and more individuals have been joining in the fight to raise money for this important cause. And in 2014 HFA successfully launched a second ride in New England.
Alongside HFA in efforts to support those affected by a bleeding disorder are the annual hemophilia walks. Since 2008 people from Anchorage to Honolulu have come together to help support the National Hemophilia Foundation in its quest to support research and services for people with bleeding disorders. I choose to walk alongside those from my local chapter, the Hemophilia Foundation of Northern California in the lovely Cesar Chavez Park in Berkeley, Calif.
This was the second year my family and I have participated in the event. The anticipation to see all my bleeder buddies was killing me. After our unforgettable family camp weekend to Camp Arroyo in January and my trip in March to HFA’s Symposium, I had left feeling like I really had connected with some of my local bleeders! I was anxious to see them and celebrate this amazing day with them.
However, fear of a severely swollen and bruised foot and what seemed like a broken toe had me worried. Up until the morning of the walk I wasn’t sure I would even be able to participate. But I woke up that Saturday morning determined and ready to go. We packed the kids up early and headed out. With my sister and niece following behind us, we were ready for a fun filled day.
There’s something so rewarding and uplifting about being surrounded by others that are just like you. I remember the same feeling last year after I met someone that I had been conversing with through social media. I hugged her and literally just fell apart. I just started sobbing on her shoulder. It was such an overwhelming feeling to finally meet someone in person who understood what our family was going through.
There’s a certain level of comfort when I go to events like this that I’m not sure all people can understand. Having a rare platelet disorder leaves me feeling like nobody knows our daily struggles. We are constantly feeling judged, misinformed, overly cautious, and misunderstood. But all that goes away when we are surrounded by people that know and understand our story. I don’t even worry about what Scarlett is wearing because it’s the only place she can sport her bruises and not fear what onlookers are thinking. Instead ,they are almost viewed as badges of courage.
As we approached the registration area with some 80’s music pumping in the background, I heard someone call out my name and it began. As I ran over to give hugs and hellos I was blessed with that feeling of love, support, and understanding.
Once we were done registering, we headed over to get our necklaces. This is one of my daughter’s favorite parts of the day. Each colored necklace given out represents whether you are a carrier, parent, sibling, friend/supporter, bleeder, or have lost a loved one. We picked out our necklaces, grabbed some breakfast, and the kids were ready to venture through the booths. Another great thing about these events is they are designed to accommodate all ages. The kids walked around collecting pens, hoola-hoops, swords, bubbles and sunglasses while we got to catch up with friends, old and new.
After that, the kids all gathered together alongside their parents and jammed to a Zumba class, followed by a word from the HFNC. We were pleasantly surprised to hear that they had surpassed their goal of raising $110,000 and that our team was able to raise a whopping $10,665 of the $120,579 that was raised. A word from the sponsors and WE WERE OFF!
This year I was fortunate enough to have my sister and niece join us all the way from Tahoe and I can only hope each year we can rally more people to come and join us. Advocating and networking have become a huge part of my life since my daughter and I were diagnosed with a storage pool disorder and I’m always thankful for events like these.
Even if there isn’t a walk or bike ride in your area, there are many ways for patients, friends, and family to come together and give back to the community while being physically active. For those that can’t ride in HFA’s Gears for Good Charity ride, there’s even a virtual ride option where participants are encouraged to have friends and family support the cause by joining you on your own virtual ride. I would encourage those that have never participated to get hold of your local chapter and find a walk, bike ride or virtual ride near you. It feels good to give back – I invite you to join me in helping raise awareness and funds for our community.
Kari lives with her husband, Ryan, and 6-year-old daughter, Scarlett, and 2-year-old son, Walker, in California.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure the accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers