Click On The Kid’s Picture For Their Page

meaghan (51)*katelyn (73)*gracee (26)*Lucas and Chris*kieran and bailey (35)*Jessica and Erik*karissa (27).jpg2*joost (1).jpg2*kelly 16*christina*jessica (4)*sarah (55)* Dressed Up For JHD*mia (12).jpg2*Carissa and Judy*Bryan (1).jpg2*brittany*chris jr and jasmine (41).jpg2*kathleen and laura (37)*Cailey (194)* virginia (357)*daylan (65)*Me, Erica, Karli, and Stitch*cameron (106)*ethan (52)*cory (37)*adiana (14).jpg2*Bre'don*kendra (60)*tawna (57)*shane (2).jpg2*mitch (81)*Meghan*khalia and kiara (136)*wyatt (4)*Emily*E.T. Leon*giuliano (136)*amethyst*brandon (41)*savanha*terry (8)*liam (10)*Rachel*mckenna (14)*elli (35).jpg 2*269657_2082773263911_2795567_n*Patrick*

*RayLynn*ty*Debbie's_10th_Birthday_with_David_and_Linda.jpg2*keely (58)*christian (5)*Haley and Katie*10363473_711243318930615_1797763579530988344_o*beth*dominic (105)*vicki josh and melisa.jpg2*christopher and sadie (44).jpg2*olivia (23)*Kochan*



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This Website Is For..

Learning that juvenile huntington’s disease is real, helping kids with jhd, learning about jhd, showing the reality of jhd, reading kids stories, donating to kids medical or bucket lists directly to their parents , 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.

You can scroll down and you’ll find bucket lists and medical care donations 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

Virginia’s Medical Care

cameron (53)

Cameron’s gi surgery

Cameron’s Medical Care

Cameron’s Bucket List



Aidan’s From IA Bucket List

Aidan’s Medical Care

Erica in a submarine

Erica in a submarine

Erica’s From MI 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’s From WA Bucket List



Kendra’s Bucket List

Kendra’s Medical Care



Elli’s 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:



Chris From WA Bucket List

khalia and kiara (131)

Khalia and Kiara

Khalia and Kiara’s Bucket Lists

Dressed Up For JHD

Dressed Up For JHD

Byron’s From TX Bucket List

amethyst (24)


Amethyst’s From NY Bucket List



Ethan’s From Texas Bucket List

Ethan’s Medical Care

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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 100% of donations go to Juvenile Huntington’s Disease Natural History study 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: *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


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