NOTE: This 1/7/14 post also appears on the A Cure In Sight™ blog.
Last year was very good year for ocular melanoma awareness, patient services, and research… and for us at A Cure In Sight™. With our first year tucked under our belt we can reflect and call it a winner! Highlights include…
- Starting the first line of OM awareness products
- Forming a Cure Companions™ a buddy system for OM patients
- Partnering with OMF to provide OM awareness and funding
- Enjoying lots of rewarding interaction with our OM community
- Finding our VP of Product Development, fellow OM patient Tania Herfurth of Small White Cat Design, then quickly putting her to work
Not bad for an exclusively volunteer staff!
We began the year knowing that we needed to boost OM awareness substantially (”through the roof” as we say). But, how, was the hard part. We took a shot in the dark (literally, with limited eyesight!) and started by developing our line of awareness products. No one previously had created OM directed clothing or awareness products. We were lucky to have Mike Malcom design our first sterling silver and epoxy charm for our earrings, bracelets and necklaces. Then Tania got us rolling with a cool pirate shirt and hoodies (that crazy pirate even became our official mascot!). Tania also created several other designs for shirts and other pieces that we placed in our ACIS Cafe Press store. Plus we produced the first OM awareness ribbon car magnet. All of these items allow us to share OM awareness and enable others to “represent” too.
In May 2013 we were honored to have the largest team at the MRF/Universal Studios 5k Run/Walk. We were one of two teams to represent ocular melanoma within the larger melanoma community. Our 60-person team raised $2,500 for the MRF/Cure OM initiative to support ocular melanoma research. Our big group participated in person and as virtual partners while walking and running with us at their homes. We were united in spirit and honored to take home the prize for largest team!
In August 2013, in response to the OM community’s request for more support for the newly diagnosed and metastatic sufferers, we initiated our ACIS Cure Companions™ program. The idea occurred after watching a fellow OM warrior fight late stage disease… alone. He really needed a way to get to the doctors, and for someone to go with him, but that option just did not exist. The community voiced a need for a program where we could help each other… a patient-driven service. Cure Companions™ was born out of this need. So we brought together a wonderful group of patients and caregivers who’d volunteer to be there when a patient in need is newly diagnosed or when a patient simply would like support from “someone in their corner.” The companions offer a variety of resources to their buddies. The best being a kind voice from someone who has been there… someone to make them feel less alone.. .or someone to talk to when nobody else can relate. We hope to grow our program and, ultimately, provide a Cure Companion™ in every city in every state.
Over the course of the year we were again honored to partner with the Ocular Melanoma Foundation to raise awareness and funds for research and patient programs. From July to November we served on the Patient Steering Committee for the OMF’s 2013 Eye Am Not Alone Patient Retreat. The annual retreat is a valuable resource for OM patients and caregivers where they can meet, share information, and learn about the latest advancements in care and management from top OM doctors and researchers. Our founder, Melody Kling, spoke about our work at A Cure In Sight™ and the vision that we share with OMF. Melody also received a very special “service to the OM community” award from OMF. Tania designed OMF’s 10-year anniversary logo and worked with OMF’s Chairman Grant Allen to create the awareness shirts and retreat shirts provided at the retreat.
Most importantly, we found the 2013 EANA Patient Retreat especially beneficial because it allowed us to gather valuable information from the OM community. We learned about what patients and caregivers really want and we will use this info to plan our 2014 events. We learned that the OM community desired an additional annual get together focused on fellowship and peer-support. They wanted it to be something fun, at a unique destination, to connect with others fighting the same fight. So a group of us met with the idea of planning a benefit golf tournament, in a beautiful location, with plenty of time to socialize, and the opportunity to raise money for OM research and patient programs. Then we flew the destination idea out for suggestions.
After some great input we chose Napa, CA because the majority indicated interest in a West Coast location. We agreed that the beautiful Napa Valley vineyards, golf courses, and rolling hills provide a naturally peaceful destination where OM patients and caregivers can unwind and spend special time with their extended OM family. We selected May 3, 2014 as the date for our first annual ACIS-OMF Eye Believe In a Cure Benefit Golf Tournament at Eagle Vines Golf Course in Napa, CA. With the location “a go” the only major question left unanswered was what to provide for our non-golfers? Thankfully our Napa contacts had that covered by suggesting that we also offer a winery tour and, possibly, a spa excursion. By offering a local winery tour we will give non-golfers an equally appealing Napa Valley experience. So mark your calendars to attend, what we hope to be a wildly successful event, on May 3, 2014 to benefit OM and to give our immediate OM community a weekend of fun and friendship surrounded by nature’s beauty.
As a fabulous bonus, we are extremely pleased to note that OMF will partner with us on the golf event and in our effort to raise $50,000 for OM research and patient programs. Patient programs are severely under-funded and were non-existent until 2013 when OMF started their TAG program (travel assistance grant) to assist patients with airfare and lodging for treatment and follow-up care. OMF also began a new program for prosthetics where they offer grants to those who cannot afford a prosthetic eye after removal of their OM affected eye. Similarly, at ACIS, we offer a program to assist patients with personal expenses and medical bills.
We look forward to the future when we can expand our patient services. There are just too many people who receive a life-changing diagnosis and, with that, a life-changing financial position, usually for the worst. Together, as a community, we can help. We can help each other afford a cure by promoting awareness, research, and patient services. And we can do it while enjoying patient retreats, educational conferences, and energizing events like our upcoming ACIS-OMF Eye Believe in a Cure Benefit Golf Tournament on May 3, 2014. After all, finding a cure is useless unless we have access to those life-saving treatments and options. As you can see… research and patient program funding is greatly needed so be sure to watch for event details on our website here, our event site at www.eyebelieveinacure.net, and on OMF’s site at www.ocularmelanoma.org!
Already a week into 2014 it is with tons of gratitude that we “look” back on a wonderful 2013. We whole-heartedly thank our OM community for joining us in our efforts and for providing such helpful feedback. We thank all those who help spread awareness and who provide life-saving treatments and research. Because of you there is “a cure in sight.”
We look forward to a 2014 equally as full of promise and prosperity. Please join us on May 3, 2014 in beautiful Napa, CA, at the ACIS-OMF Eye Believe in a Cure Benefit Golf Tournament to help make it a reality!
Always our best,
Your friends at A Cure In Sight™