Featuring:

Marla Murasko, Special Needs Health Activist

Janeen Zumerling, Food Allergy Health Activist

and Amanda Dolan of WEGO Health

Health Activists: Advocating for Others Webinar

We’ve got some discussion points that Marla and Janeen will be covering, but if you have comments, please share them in the chat window! You don’t need a microphone to participate. Just listen through your computer speakers! And just as a reminder, Q&A can be sent through the “Questions” field in the webinar software or using Twitter. The Twitter hashtag for tonight’s webinar is:

#wegowebinar

Housekeeping Items

Health Activists are living testament to empowerment – journeying from self-education, perseverance, to sharing and empowering others. Health Activist caregivers and parents have so much in common with e-patients, but also have many unique challenges. Today let’s hear the stories of two empowered Health Activists who advocate for the health of their children and raise awareness for health conditions that have come into their families’ lives.

Advocating… for Others

Marla

All About…

Marla Murasko is a mom, wife, entrepreneur, advocate and first-time author of

her book entitled “Jacob’s Journal – My Journey Home.” She is the owner of

Marla Murasko Enterprises, Inc. a business support services company. President

and Founder of SpecialMoms Entrepreneur Club an online community for

mothers of special needs children who want to pursue a dream of becoming an

entrepreneur. Her greatest joy is her son Jacob who was diagnosed at birth with

Down Syndrome. She is a proud mother of a child with special needs. You can

find Marla at http://specialmompreneurs.com or on Facebook

www.facebook.com/specialmoms.

Janeen

All About…

Janeen Zumerling is a Health Community Manager, Blogger and Food Allergy

Advocate. She can be found blogging at: Our Story: The Good, the Bad, and

the Food Allergies (www.zumfamily.blogspot.com) and at Mom's Food Allergy

Diner (www.foodallergycooking.blogspot.com). A former Sales and Marketing

Representative, Janeen is currently a stay at home mom and lives in Ohio

with her husband and two young sons one of whom has multiple life

threatening food allergies and asthma.

The Beginning…

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 does

caring for your child and his or her health condition

impact 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 most

taxing experiences there is – how

do you manage to keep yourself

healthy and get help when you

need it?

Raising Awareness.

Where does awareness start?

How has online community helped

you?

What suggestions do you have for

other 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 Board

http://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 Board

http://community.babycenter.com/groups/a30615/asthma_and_allergies

Asthma Allergies Children

http://www.asthmaallergieschildren.com/

Allergic Girl (Please Don't Pass The Nuts Blog)

http://www.allergicgirl.blogspot.com/

Allergy Mom's

http://allergymoms.com/

Allergic Child

http://www.allergicchild.com/

Loudoun Allergy Network

http://www.loudounallergynetwork.org/

#foodallergy

Q&A

Thank you!

@specialmoms

specialmompreneurs.com

http://marlamurasko.com

facebook.com/specialmoms

@chupieandjsmama

http://www.zumfamily.blogspot.com

http://foodallergycooking.blogspot.com

facebook.com/janeen.albertszumerling

Marla Janeen

Thanks for listening in to our conversation tonight! For more information on caregiving, parent advocacy, and Health Activism – check out the WEGO Health Blog

Start a conversation in our

Children’s Health and Parenting Group

Blog.WEGOHealth.com