|
Although the first contact for families who call us is our staff, MAGIC has a second group of parents who working tirelessly for families. These parents are called Division Consultants. Each has a child with a specific condition and is available to speak to you from great personal experience. And while "we" are not medical experts, we can help you understand really troublesome medical "stuff" in a way that is easier to grasp. We can also tell you how we dealt with situations similar to what you are going through, and how things turned out for our children.
These great Division Consultants spend countless hours answering emails, talking on the phone and assisting the families. Together they form the Division Consultant Committee. (scroll down for more support areas)
Division Consultant Committee
|
|
|
|
|
Cathy Kusch
Congenital Adrenal Hyperplasia |
Denise de Reyna
Central Precocious Puberty |
Courtney Rivard
Growth Hormone Deficiency-Child. |
|
|
|
|
|
Jamie Sorenson
Insulin-like Growth Factor Deficiency |
Sandy Jones
Growth Hormone Def.- Adults |
Angie & Jeff Dudley
McCune-Albright Syndrome/Fibrous Dysplasia |
|
|
|
|
|
Panhypopituitarism/ Tumors
|
Dayna Carney
Russell-Silver Syndrome |
Rachel Steen
Optic Nerve Hypoplasia/
Septo Optic Dysplasia |
|
|
|
|
|
Gretta DeSantis
Turner Syndrome |
Stacy
Cushing Syndrome for Adults |
Shannon Barrett
Small for Gestational Age |
Network Coordinators- what is a Network? click here
In addition to the amazing Division Consultant Committee, we have great volunteers (network coordinators) who focus on a specific area of need for families. They include:
Lola Fortier, Chronic Renal Insufficiency
Linda Blevins, Down Syndrome as it relates to growth problems
Ellen Jones, Disorders of Sexual Development
Sharon McHugh, Graves Disease
Ann Bartsch, Thyroid Disorders
Tracey Porrecca, Hypophosphatasia
Erica Rieger, Jeunes Syndrome
Sandi Bradshaw, Sheehan's Syndrome
Rani Elway, Schwartz-Jampel Syndrome
Beth Hultquist, Sensory Integration Disorder/Failure to Thrive
Michelle Scognamio- Arnold-Chiari Malformation
Special Interest Group Coordinators:
We also have parents who volunteer to non-disorder specific areas which they have a special knowledge of. They include:
Jodi Zwain, School Accomodations
Yvetter Getch, School Accomodations
Beth Hultquist, Sensory Integration Disorder/ Failure to Thrive
Our technical volunteers include:
Andrea K., Insurance Message Board
Anita W., GHD-children Yahoo Listserve
Danielle B., RSS Listserve
Edward Champ, Walk-a-Thon website (www.walkformagic.org)
Lorali S., GHD Message Board
Jamie S., IGFD Message Board
Jamie RC., CAH Message Board
Ken M., RSS Yahoo Listserv
Russ H., MAS / FD Message Board
Susan L., SOD / ONH Listserve
Tamika H., CPP Message Board
As parents of affected children we all benefit from the great work of all these tremendous people. Feel free to contact them for questions or just to tell them thanks! They can be reached via the Contact Us link on the left. Simply put their name in the subject line and we will make sure they get it!
As a parent of an affected child, or affected adult, .if you would like to volunteer your time to answer phone calls regarding a rare disorder or other special talent, please call our office and ask to speak with Dianne. She can be reached at (800) 3 MAGIC 3. Thanks!
|
