Advocating for ARPKD/CHF
As parents of children or adults living with this disease, you’re certainly accustomed to advocating for the countless medical and support needs for your child or yourself. Nothing embodies “trial by fire” like a life threatening, chronic diagnosis you’ve never even heard of. The day your child was born, you instantly became an advocate and took your first step on the road to navigating a complex healthcare system ensuring the best care for your child.
Another equally important form of advocating for your child is to advocate for this disease. Often we are too exhausted and overwhelmed to even consider what we can do to further the cause. Rare diseases are competing for attention with other well known childhood diseases like juvenile diabetes. Raising awareness for ARPKD/CHF is important because, let’s face it, who else is going to do it but us?
When diseases are uncommon and affect small numbers they don’t receive attention desperately needed to raise money for research. That is where we come in. Funding for research is part of the process of finding a cure or treatments, and thus far we have not even seen a clinical drug trial for our disease.
As parents, we must consider our call to be a voice for ARPKD/CHF; to inform, educate and advocate so we can move our unfamiliar disease into the spotlight and generate awareness and funding for research both now and in the future.
A disease is considered rare in the United States when it affects fewer than 200,000 Americans at any given time. It is estimated that 50 percent of rare diseases affect children, so we’re not alone. Organized awareness can make a BIG difference; here are a few suggestions to get you started:
Plan an event: nothing draws and unites family and friends together for support and awareness like a fun event. Consider a community golf outing, walk/run, car wash, wine and cheese tasting, neighborhood garage sale, silent auction or BBQ and invite family, friends, neighbors, colleagues, and anyone else you know.
Use social media: spread the word about ARPKD/CHF and the ARPKD/CHF Alliance, there were the first to raise comprehensive disease awareness and by sharing our Facebook page, sending the ARPKD/CHF Alliance website link in emails to family and friends, posting your updates and personal stories and photos, you create awareness by putting the faces of our children and families to this disease.
Tell your story: contact your local newspaper and media affiliates and share your story. Look for larger affiliates in cities close to where you live. For example, if you live in Cambridge, MA, you could contacts the NBC, CBS, FOX and ABC affiliates in Boston, MA. Go to their websites and click on the “about us” or “contact us” section. Segment producers and Health or Lifestyle reporters are the best contacts to reach out to. Every ARPKD/CHF family has a unique and inspirational story to tell and that story is a great way to advocate for ARPKD/CHF and the ARPKD/CHF Alliance to increase awareness, and to ask for donations to support our cause. Take into consideration a unified message that focuses not just on your child, but a disease that affects others. Ask them to include the ARPKD/CHF Alliance in your story, this allows us to fight for others similarly affected.
If you have skills or a special talent you can share, such as photography, video production, fundraising, blogging, or you are super savvy with social media, please contact me at Linda.Bevec@gmail.com. Do you have fundraising experience or ideas? If so, please contact me at Linda.Bevec@gmail.com. Are you talented with writing or graphic design, and would like to help the ARPKD/CHF Alliance put together well written and designed promotional pieces to hand out at fundraising events, please contact me at Linda.Bevec@gmail.com.
The most important thing you can do is get involved in the work of this important organization, so it can better support you and this disease. The ARPKD/CHF Alliance NEEDS YOUR HELP AND YOUR SUPPORT. Your involvement can help us move this disease into a brighter light, giving it improved recognition that it so desperately needs to generate awareness and funding.
A ripple starts with a stone. Imagine the impact if EVERYONE did something to further the cause, what an enormous difference we ALL can make TOGETHER! Consider what you can do to help champion the cause by getting involved, to build a better future for ARPKD/CHF.
