Health Activists:Advocating for OthersWebinar Featuring: Marla Murasko, Special Needs Health Activist Janeen Zumerling, Food Allergy Health Activist and Amanda Dolan of WEGO Health
Housekeeping ItemsWe’ve got some discussionpoints that Marla and Janeen will becovering, but if you have comments,please share them in the chat window!You don’t need a microphone toparticipate. Just listen through yourcomputer speakers!And just as a reminder, Q&A can be sentthrough the “Questions” field in thewebinar software or using Twitter. TheTwitter hashtag for tonight’s webinar is: #wegowebinar
Advocating… for OthersHealth Activists are living testament toempowerment – journeying from self-education, perseverance, to sharing andempowering others.Health Activist caregivers and parents haveso much in common with e-patients, butalso have many unique challenges.Today let’s hear the stories of twoempowered Health Activists who advocatefor the health of their children and raiseawareness for health conditions that havecome into their families’ lives.
All About… MarlaMarla Murasko is a mom, wife, entrepreneur, advocate and first-time author ofher book entitled “Jacob’s Journal – My Journey Home.” She is the owner ofMarla Murasko Enterprises, Inc. a business support services company. Presidentand Founder of SpecialMoms Entrepreneur Club an online community formothers of special needs children who want to pursue a dream of becoming anentrepreneur. Her greatest joy is her son Jacob who was diagnosed at birth withDown Syndrome. She is a proud mother of a child with special needs. You canfind Marla at http://specialmompreneurs.com or on Facebookwww.facebook.com/specialmoms.
All About… JaneenJaneen Zumerling is a Health Community Manager, Blogger and Food AllergyAdvocate. She can be found blogging at: Our Story: The Good, the Bad, andthe Food Allergies (www.zumfamily.blogspot.com) and at Moms Food AllergyDiner (www.foodallergycooking.blogspot.com). A former Sales and MarketingRepresentative, Janeen is currently a stay at home mom and lives in Ohiowith her husband and two young sons one of whom has multiple lifethreatening food allergies and asthma.
Educating Yourself What sparked your self-education? What tips do you have for others who are facing the diagnosis of a loved one? How can others self-educate?
What does empowerment look like? When have you felt empowered? How is it different to be empowered as a caregiver? What advice do you have for other parents and caregivers empower themselves as care-takers?
From empowered carer to active advocate. What sparked your advocacy? How can other carers become advocates for their loved ones and the conditions in their lives?Photo credit: Chris Humphreys http://www.photo-seminars.com/Seminars/wildlife/wildlife.html
Taking on the world outside. As a carer, you know you’re most in control when you’re in the comforts of your home. But when you leave that space and take on the world outside and face the public – how does your caregiving change?
Challenges.Parenting is one of the hardest jobs there is – how doescaring for your child and his or her health conditionimpact your parenting. What are the toughest parts?How do you address these struggles?
Putting on your oxygen mask first.Caregiving can be one of the mosttaxing experiences there is – howdo you manage to keep yourselfhealthy and get help when youneed it?
Raising Awareness. Where does awareness start?How has online community helpedyou?What suggestions do you have forother carers raising awareness?
Resources!Congenital Heart Defect Resources: American Heart Association http://www.heart.org/ Mended Little Hearts http://mendedhearts.org/The Congenital Heart Information Network http://tchin.org/
Resources! Down Syndrome Resources: National Down Syndrome Society http://www.ndss.org/ National Down Syndrome Congress http://www.ndsccenter.org/Down Syndrome Research Foundation http://dsrf.org/ Special Advocacy Information: Wrightslaw http://www.wrightslaw.com/
Resources! Food Allergy Resources: Food Allergy and Anaphylaxis Network http://www.foodallergy.org/ Kids With Food Allergies http://www.kidswithfoodallergies.org/ Allergy Kids http://www.allergykids.com/ Baby Center Food Allergy Boardhttp://community.babycenter.com/groups/a1025165/old_bbc_food _allergy_support_group Epi Pen (Dey Pharmaceuticals) http://www.epipen.com/
Resources! Asthma & Allergy Resources: Baby Center Asthma and Allergy Boardhttp://community.babycenter.com/groups/a30615/asthma_and_allergies Asthma Allergies Children http://www.asthmaallergieschildren.com/ Allergic Girl (Please Dont Pass The Nuts Blog) http://www.allergicgirl.blogspot.com/ Allergy Moms http://allergymoms.com/ Allergic Child http://www.allergicchild.com/ Loudoun Allergy Network http://www.loudounallergynetwork.org/ #foodallergy
Thanks for listening in to our conversation tonight! Formore information on caregiving, parent advocacy, andHealth Activism – check out the WEGO Health Blog Blog.WEGOHealth.com Start a conversation in our Children’s Health and Parenting Group