Summary of 2012 ARPKD/CHF Midwest Family Gathering

June 3, 2012 / The ARPKD/CHF Alliance / 1 Comment / ARPKD/CHF Alliance

An ARPKD/CHF Alliance Gathering 

Hope for the future

On May 19^th over a dozen ARPKD/CHF families from throughout the Midwest gathered in Southeastern Wisconsin for an afternoon of fun, fellowship and support on a sunny hill overlooking Bristol Woods Park. We shared stories about our children and the difficult journeys we’ve each been on with this disease. We talked about medications, diet, doctors, transplants, and facing the daily challenges of raising children and maintaining a family in the midst of the chaos this disease inherently comes with.

We also discussed the future of the ARPKD/CHF Alliance and the hopes we have for our children. As an ARPKD/CHF mom and Alliance Board Member, I’m excited about the future and hopeful that our children will one day see a treatment for this disease. For the 1:20,000 babies born with ARPKD/CHF, roughly half still don’t survive infancy, and for those who do survive, there are kidney and liver complications which are life-long and progressive.

Our little Midwest Gathering brought families together in the spirit of hope and gave us an opportunity to build relationships, support one another, and plan for an even bigger event next year.  It also raised several hundred dollars.

The ARPKD/CHF Alliance works hard at advancing medical research and understanding, educating the public, and importantly, advocating for our children and all families affected.  We are the only organization in the world solely dedicated to ARPKD/CHF and we’ve made great strides in changing the face of this disease.

You can make our voice even stronger by getting involved.  Consider making a donation to the ARPKD/CHF Alliance now, or coordinating a fundraiser in your own community with family and friends.  Here are a few more suggestions:

• Plan a fundraiser in honor or memory of your ARPKD/CHF child. Gather family and friends to coordinate a walk/run, family picnic or festival, golf outing, community rummage sale, coin collection, wine & cheese tasting party, silent auction, etc. There are so many ways you can increase awareness and raise money to help the ARPKD/CHF Alliance, and we can assist you in your planning.
• Share your story. The journey you’re on with your own child is special and unique. If you’d like to write something about your child, please let us know; it is a great way to advocate for this disease.  In fact, we will personally help you put something together, submit what you’ve written for review, or be interviewed. We even have a freelance writer willing to help!  We’d like to post more stories about our children and those affected by ARPKD/CHF, to share the message of hope.
• Attend both the ARPKD/CHF Clinic and Family Conference in Philadelphia, P.A., September 14-15, 2012!  Learn more about disease specifics, current care, and research updates.  It is a wonderful way to connect with others and meet leading experts and researchers in the field.  Our last conference was a smashing success!  More information is located just below in the blog.
• Become an ARPKD/CHF Alliance promoter, tell others about the ARPKD/CHF Alliance, “like” us on Facebook, and share our website address with family and friends (currently being updated).
• Hold an ARPKD/CHF Gathering in your area.  We would like to see other ARPKD/CHF Alliance family gatherings nationwide, even internationally.  Maybe you would like to coordinate one in your hometown or area? Together we can make the voice for ARPKD/CHF stronger, but we need your help to do so!
• Use your own ideas.  Tell us how you would like to get more involved, we are open to ideas and suggestions.

Please join us in making this organization stronger.  Give hope and help change the future of this disease forever.

Respectfully,

Linda Bevec

See reflections of the day at “An ARPKD Family Reunion” by Kathy Johnson Eby