Global Genes is proud to introduce our newest team of series writers, authors, and guest bloggers.
Joan Friedlander | Adapting to Limitations
In this original series, author of Business from Bed and Women, Work and Autoimmune Diseases, Joan Friedlander, takes on the topic of chronic illness and career. Using her own journey as a Crohn’s patient, Friedlander will attempt to answer the age-old question, “how the heck am I going to support myself (and/or my family) and do something that engages me when my body is so unreliable?” Learn more about Joan here and make sure to check out the first installment of her series “The Employment Plan” at The RARE Daily!
Joy Selak | Living Well, Even While Sick!
Joy Selak is the author of You Don’t LOOK Sick! Living Well with Invisible Chronic Illness. This useful guide was created to help patients like Joy, who were battling these kind of complex diseases and to help them build success and a plan for living productively with long-term illness. Her series “Living Well Even While Sick!” will focus on techniques and tools to help make the lives of patients fuller and more meaningful. Learn more about Joy here. (Series Coming Soon!)
Sammy Witness | Diares of a First Time Caregiver
Sammy Witness is a 27-year-old caretaker for fiancé, Joey. Joey was recently diagnosed with pancreatic cancer and is currently undergoing chemotherapy–soon to be followed by radiation. This column focuses on Sammy’s experiences on learning how to balance work, life, and taking on the new responsibilities of cleaning up “radioactive puke”, creating a healthy but enticing diet and dealing with the emotional stress of a new and unexpected life change.
Tanya Johnson | Leading IEP Champions
Tanya Johnson is a mother, special education resource teacher, advocate and Founder of IEP Champion and Co-Founder of FPWR Canada. Her new series will empower parents to advocate for their children through the school system, setting them up for continued success in their education. They will learn to understand the language of an IEP, set effective goals, track progress and work with their school team effectively and positively. Learn more about IEP Champion here! (Series Coming Soon!)
Lisa Moreno Dickinson | RARE Parenting
Lisa Moreno Dickinson is a proud parent of children with rare disease and the founder of StopCAIDnow, Inc. which is a non-profit organization recognized globallyThey are a 501c3 accredited non-profit. The foundation is focused on treatments, awareness, diverse genetic testing, genomics. Her series will work to inspire parents to channel their inner leader and fight for change on a legal, pharmaceutical, emotional and educational playing field. Through her series, we will explore controversial topics, social issues and all of the complex and rewarding facets that go into being the mother of someone who in every way is truly unique. (Series Coming Soon!)
Jenna Maddix | Life with Lowe
Jenna Maddix, a NASA Public Affairs specialist from a previous life, now works towards awareness for the rare disease “Lowe Syndrome.” She says, “my series will be about our experience with Lowe Syndrome, how we came to get that diagnosis for our son, and what his daily challenges are like for him and our whole family living with this rare condition. I’ll write about the good and the bad. From our feelings on researching and getting the official diagnosis of LS to the indescribable feelings of love and optimism Noah has given us despite these everyday challenges.” Learn more about Jenna here. (Series Coming Soon!)
Stacey Philpot | Sick But Social
Stacey is an author, goofball and avid reader. You can find her blog at chronicallywhole.com where she endeavors to encourage other warriors like herself along in their journey of battling for health and discovering wholeness. She is mom to Hayden and Avery, stepmom to Julie and wife to Ryan (a smarty pants who works at NASA and logs their whole life on spreadsheets and pie charts, true story!) She has a strange affinity for eating whole meals in bed (don’t tell anyone) and is convinced smelling old books will make her smarter.
Emma Rooney | Running on Stories
How can we tell our story so that it has the most positive, most powerful impact? Emma Rooney knows, and she’ll be producing a series for Global Genes on just how patients and advocates can relay their personal journey to bring awareness, educate and shed light on their disease. Her posts will showcase a diversity of talented storytellers, explore the popular platforms being used, unpack the types of stories being told, and draw attention to the important missing voices.
Kate Welch: The Not-Quite-Empty Nest
Kate Welch, author of the blog “Neverland Without a GPS” shares her journey as a proud, single mother of two great children—her 20-year-old daughter who is a microbiology major in her third year of college and her 19-year-old son who has 22Q Deletion Syndrome.
Through her series here, she hopes to reach out to everyone who belongs within the rare community and ben an asset who can spread knowledge and understanding on the topic of caregiving to an adult child.
Elizabeth Paddock | From a Rare Parent
Elizabeth Paddock is a mother, wife, and writer from southeast Michigan. With a master’s degree in clinical social work, Elizabeth has been a stay-at-home mother of identical twin boys for the last six years which has allowed her to focus on her family and her writing. She has written for the medical talk show Ask Dr. Nandi as well as the award winning Hollywood Mom Blog and is currently working on her first book about gifted education. Elizabeth has a primary diagnosis of Mast Cell Activation Disorder along with secondary diagnoses of Postural Orthostatic Tachycardia Syndrome and Joint Hypermobility Syndrome. For more information on mast cell disorders, please visit The Mastocytosis Society at www.tmsforacure.org.
About Ashanthi De Silva
Ashanthi De Silva is a rare disease blogger and patient advocate living with SCID-ADA. Originally from Ohio, she graduated from Ohio State University with an undergraduate degree in international relations and a Masters in Public Administration. She lives with her husband and Shih-tzu mix fur ball, Maya, in Logan Square, Chicago, and enjoys traveling every year to see family in Sri Lanka. She is involved with raising awareness for primary immune deficiencies through the Immune Deficiency Foundation. Her new blog, Life with PI (www.lifewithpi.com) focuses on story sharing of her personal experiences, as well as other patients and caregivers
Tiffany Early | My Life with Ehlers-Danlos
Tiffany Early is a 31-year-old former middle school teacher who enjoys blogging from her back porch. Tiffany manages her blog ( www.crazychroniclife.wordpress.com ) where she examines life and relationships with chronic illness while laughing at the absurdity of the whole debacle. She also writes about her adventures in “Snooki”- the attention-seeking wheelchair. She also runs an online support group for those living with chronic illness. Tiffany strives to find the bright side . . . or at least the humorous side to living with Ehlers Danlos Syndrome every day and wishes peace, love, and health to the entire rare disease community.