jhdkids.jpg

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This Website Is For..

Learning that juvenile huntington’s disease is real, helping children with jhd, learning about jhd, showing the reality of jhd, reading kids stories, donating to kids medical or bucket lists directly to their parents, sending the kids cards, I do not make profit off of this!! It goes directly to the families!! I just really love these kids

It is also for the university of iowa’s jane paulsen’s team to support them in their efforts of bringing forth help for the children.

The children’s stories are on the right hand side scrolling down, you can click on their photos for their stories, on jhdkids.com you can scroll down and you’ll find bucket lists and medical care donations and a link to the cards page you can send cards to the kids, and you’ll learn more about the initiative

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Help The Kids!!

All Money Donated On This Page Goes Straight To The Children’s Parents For Use Of Their Children’s Needs  

She's so brave Virginia

She’s so brave Virginia

Virginia’s From PA Bucket List

http://jhdkids.com/virginias-bucket-list/

Virginia’s Medical Care

cameron (53)

Cameron’s gi surgery

Cameron’s Medical Care

Cameron’s Bucket List

http://jhdkids.com/camerons-bucket-list/

Aidan

Aidan

Aidan’s From IA Bucket List

http://jhdkids.com/aidans-bucket-list/

Aidan’s Medical Care

Erica in a submarine

Erica in a submarine

Erica’s From MI Bucket List

http://jhdkids.com/ericas-bucket-list/

So Sweet Jessica and her Mom

So Sweet Jessica and her Mom

Jessica’s Bucket List

Jessica’s Medical Care

tawna (52)

Tawna

Tawna’s From WA Bucket List

http://jhdkids.com/tawnas-bucket-list/

Kendra

Kendra

Kendra’s Bucket List

Kendra’s Medical Care

Elli

Elli

Elli’s Bucket List

http://jhdkids.com/ellis-bucket-list/

Katie and Her Daughter Haley Both Have JHD

Katie and Her Daughter Haley Both Have JHD

Katie and Haley’s Medical Care

Katie and Haley’s Bucket Lists

Katelyn at the iowa study with Nevaeh

Katelyn at the iowa study with Nevaeh

Send Donations For Katelyn’s Medical Care To:

http://jhdkids.com/katelyns-bucket-list/

Chris

Chris

Chris From WA Bucket List

http://jhdkids.com/chris-bucket-list/

khalia and kiara (131)

Khalia and Kiara

Khalia and Kiara’s Bucket Lists

http://jhdkids.com/khalia-and-kiaras-bucket-lists/

Dressed Up For JHD

Dressed Up For JHD

Byron’s From TX Bucket List

http://jhdkids.com/byrons-bucket-list/

amethyst (24)

Amethyst

Amethyst’s From NY Bucket List

http://jhdkids.com/amethysts-bucket-list/

Ethan

Ethan

Ethan’s From Texas Bucket List

http://jhdkids.com/ethans-bucket-list/

Ethan’s Medical Care

http://www.gofundme.com/ethan-sparks-medical-fund

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Jane Paulsen’s Team

family advocates visit U of I for the first time meeting with Jane Paulsens team for NHS

family advocates visit U of I for the first time meeting with Jane Paulsens team for NHS

Juvenile Huntington Disease Natural History Study

Juvenile Huntington Disease Natural History Study examines the effectiveness of clinical measurements related to Huntington disease in individuals who have shown features of the disease before the age of 20. The study will compare the current adult version of the Unified Huntington’s Disease Rating Scale to a new modified version specifically developed for the juvenile population. The purpose of this research study is to better understand the disease and to improve the currently available tools to follow the course of the disease in this younger age group. Individuals who have shown features of juvenile Huntington disease before the age of 20 may participate in this study. For more information, contact Amanda Miller at 319-335-6640 oramanda-c-miller@uiowa.edu. 100% of donations go to Juvenile Huntington’s Disease Natural History study http://www.medicine.uiowa.edu/Newsarticle.aspx?id=13321 http://www.medicine.uiowa.edu/dept_primary_apr.aspx?appointment=Psychiatry&id=paulsenj You may donate to the Natural History study by mailing a check to ATTN:Juvenile Huntington’s Disease Natural History study Dr.Jane Paulsen Huntington’s Disease Society Center of Excellence University of Iowa 1185 Westlawn Iowa City, IA 52242 Phone: 319-353-4307 Toll-free: 800-777-8442 (ext. 34307) Fax: 319-335-6960 Email: hdcenter@uiowa.edu *Since the members of the initiative are volunteers, all tax deductible money goes directly to research. virginia (317)

Martha Nance, MD neurogeneticist at the University of Minnesota
Jane Paulsen, Ph.D. neuropsychologist at the University of Iowa

Why have the jhd initiative?

Most of the research on Huntingtons Disease is directed at the adult population which does not directly apply to those with juvenile-onset HD because of several factors. The most significant difference is that in JHD the disease occurs before the brain is fully developed. This accounts for the wide variation at one age from JHD to another age. Maturation and neurodegeneration occur at the same time in JHD. Another unique aspect of JHD is the extremely large CAG burden which greatly effects severity. Social development, physical rehabilitaion requirements and educational goals are additional items unique to patients with JHD.
The scientist that comprise the membership of the Initative are clearly aware of these differences from their work on the adult manifest and preclinical  HD patients from their own work and they recognize the need for seperate study dedicated to juvenile-onset patients.

What Are We Doing?

  • The development and validation of a non-UHDRS scale for JHD
  • Categorization of JHD subgroups which reflect different pathology
  • Analysis of abnormal brain metabolites which suggest drug intervention
  • Drawing attention to needs of JHD as distinct from adult HD

iowa-

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Aidan

Click On Aidan's Picture For His Page

McKenna

Click On Kenna's Picture For Her Page

Adiana

Click On Adiana's Picture For Her Page

Amethyst

Click on Ame's Picture For Her Page

Anthony

Click on Monkey's Picture For His Page

Beth

Click On Betty Boop's Picture For Her Page

Brandon

Click On Buddy's Picture For His Page

Bre’don

Click Bre'don's Picture For His Page

Brittany

Click On Brittany's Pic For Her Page

Bryan

Click On Bry Bry's Picture For His Page

Byron

Click On Super Byron's Picture For His Story

Cailey

Click On Cailey Cupcake's Picture For Her Page

Cameron

Click On Cami's Picture For His Page

Chris Jr. and His Sister Jasmine

Click on Chris and Jaz's Picture For Their Page

Christopher and His Sister Sadie

Click on Christopher and Sadie's Pic For Their Page

Christian

Click on Christian's Pic For His Page

Christina

Click On Beaner's Picture For Her Page

Cory

Click On Lil Cory's Picture For His Page

Daylan

Click On Daylan's Picture For His Page

Debbie

Click On Little Debbie's Picture For Her Page

Dominic

Click Dominic's Picture For His Page

Elli
Emily

Click On Bubbles' Picture For Her Page

Ethan

Click On Doodle's Picture For His Page

Giuliano

Click On Giuliano's Picture For His Page

Gracee

Click On Gracee's Picture For Her Page

Jessica

Click on Jessica's Picture For Her Page

Jessica and Her Brother Erik

JJ and Erik

Joost

Click On Joost's Picture For His Page

Josh and His Sisters, Vickie and Melisa

Click On Melisa, Vickie, and Josh's Picture For Their Page

Judy and Her Sister Carissa

Click On Ju Ju and Rissa's Picture For Their Page

Kelly

Click On Kelly's Picture For Her Page

Khalia and Her Sister Kiara

Click on Sister and Little Turtle's Picture For Their Page

Karli and Her Sisters Erica and Jacey

Click On Princess Karli Belle's Ericas and Jaceys Picture For Their Page

Karissa

Click On Karissa's Picture For Her Page

Katelyn

Click On Ladybug's Picture For Her Page

Kathleen and Her Mom Laura

Click On Bones and Lola's Picture For Their Page

Katie and Her Daughter Haley

Click on Katie and Haley's Pic To See Their Page

Keely

Click Sweetie-Pie's Picture For Her Page

Kendra

Click On Snowbunny's Picture For Her Page

Kieran and His Brother Bailey

Click On Kieran The Kinder Kid and Bailey Wailey's Picture For Their Page

Kodai

Click On Kochan's Picture For His Page

Leon

Click On Leon's Picture For His Page

Liam

Click On Liam's Picture For His Page

Lucas and His Brother Chris

Click On Lukey and Christopher Robin's Picture For Their Page

Meaghan

Click On Meaghan's Picture For Her Page

Meghan

Click On Meghan's Picture For Her Page

Mia

Click On Mia Mouse's Picture For Her Page

Mitch

Click On Mitch's Picture For His Page

Olivia

Click On Livie's Picture For Her Page

Patrick

Click On Patrick Anthony's Picture For His Page

Rachel

Click On Rachel's Picture For Her Page

RayLynn

Click On Angel's Picture For Her Page

Rikki

Click On Rikki Rocky's Picture For Her Page

Sarah

Click On Little Bird's Picture For Her Page

Savanha

Click On Savanha's Picture For Her Page

Shane

Click On Shane's Picture For His Story

Tawna

Click on Tawna's Picture For Her Page

Terry

Click on Super Terry's Picture For His Page

Ty

Click On Ty's Picture For His Page

Virginia

Click On Ginnia's Picture For Her Page

Wyatt

Click On Wyatt's Picture For His Page

Support Groups
Facebook ---------------------------------------JHD Family For Those Related To A JHD Child http://www.facebook.com/groups/154030267967154/ ----------------------------------- Groups and Support For More Groups and Fundraisers http://www.facebook.com/groups/467392109939265/ ------------------------------------ Potential Treatments and Cures For HD and JHD http://www.facebook.com/groups/410217805688534/ ------------------------------------------------------------------------------------------------ Yahoo ------------------------------------------------------------------------------- Huntington's Support Group With Club Chats http://health.groups.yahoo.com/group/huntingtonsdiseasesupportclub/ ---------------------------------------------------------------- JHD Caregivers Caregivers Club http://health.groups.yahoo.com/group/JHDCargivers/
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