Keep Van Hove in NKH Research

Van Hove’s lab is set to close at the end of June 2018. We have a plan, but we need your help. Donate $50 today.

 

The Ask

Prof Van Hove is set to close his lab at the end of June – THIS June, June 2018 – due to funding issues. Two grants he was hoping for have fallen through and without community support he’ll close.

We have a plan. With the support of the NKH Crusaders, Joseph’s Goal and the possible fund matching by the University of Colorado, Prof. Van Hove is left with a shortfall of $20k. If we can raise $10k, and have it matched he’ll have enough to survive until the next grant results come in in Feb 2019.

So we’re asking the NKH community to support Prof. Van Hove. We need 200 NKH families to donate $50. If you don’t have $50, please run a mini lottery to raise just $50. Details below.

 

$7,081 / $10,000

Raised for Dr Van Hove’s Research.

119 NKH Families have donated

126/200 $50 Blocks Filled

$2,933 Donated by UK/EU Families

$4,148 Donated by US Families

Donate $50, buy a square!

Help Save Prof. Van Hoves lab! Every single cent helps!

$50

Donated by Sam, Elly + Mikaere

$50

Donated by Sam, Elly + Mikaere

$50

Donated by Sam, Elly + Mikaere

$50

Donated by Sam, Elly + Mikaere

$50

Donated by Sam, Elly + Mikaere

$50

Donated by Sam, Elly + Mikaere

$50

Donated by Sam, Elly + Mikaere

$50

Donated by Sam, Elly + Mikaere

$50

Donated by Nancy VanRooyen

$50

Donated by Jamie + Katy Irving

$50

Donated by Kate + Ben Robinson

$50

Donated by Kari + Kane Wyatt

$50

Donated by Kari + Kane Wyatt

$67

Donated by Delphine Pages

$67

Donated by Daniela Spulber

$50

Donated by Jade + Willow Clements

$50

Donated by Jade + Willow Clements

$60

Donated by the Makepeace Family

$67

Donated by Kristin, David + Alex

$50

Donated by Mary K. + Kane Wyatt

$66

Donated by Jamie + Katy

$66

Donated by Jamie + Katy

$50

Donated by Tonya + Delilah B.

$66

Donated by Valentino W.

$50

Donated by Tracey Schweitzer

$50

Donated by Jean West Moser

$50

Donated by Jean West Moser

$50

Amanda + Nora Jane

$50

Amanda + Nora Jane

$50

Lisa Tinkin Cope, Brian Barry + John Keiser

$50

Donated by Kimberly + Sophie

$50

Grace + Lucy

$54

Donated by Maria + Sophia and Tara + James

$67

Donated by Liz, Rob + Quin

$57

Donated by Amber Upchurch, Gail Snobarger + Margaret Davidson

$50

Donated by Terina Pooler Partin

$67

Donated by Andy + Wendy

$67

Donated by Andy + Wendy

$67

Donated by Eugene + Archie

$67

Donated by Eugene + Archie

$67

Donated by Eugene + Archie

$50

Donated by Amanda L Ramos

$50

Donated by Amanda L Ramos

$50

Donated by Jennifer Wakefield

$50

Donated by Patrick Stonehewer

$50

Donated by Michelle Albeck

$50

Donated by Michelle Albeck

$60

Donated by Erin G. Lori L, and Karia K.

$50

Donated by Ashlae O’Dell Klös

$67

Donated by Nana + Grandpa Makepeace in memory of Georgia x

$67

Donated by Nana + Grandpa Makepeace in memory of Georgia x

$56

Donated by Richard W, Pippa C, Carrie C

$50

Donated by Jim H for Lucy

$50

Donated by Margy F, Eric A and Paula V

$50

Donated by Marilyn for Lucy

$50

Donated by Marilyn for Lucy

$50

Donated by Kasey Christensen

$67

Donated by William H Nicolson

$67

Donated by The Kendricks

$67

Donated by The Kendricks

$67

Donated by The Kendricks

$67

Donated by The Kendricks

$67

Donated by Caroline

$50

Donated by Stacey Cusack

$50

Donated by Tammy Rianha

$50

Donated by Tammy Rianha

$58

Donated by Armgard Eichhoff

$58

Donated by Armgard Eichhoff

$58

Donated by Armgard Eichhoff

$58

Donated by Armgard Eichhoff

$55

Donated by Liz Hutchinson, Craig Keiser + Danielle Kennebeck.

$67

Donated by Maria Idaline Gouveia

$50

Kristin Zabriskie Archibald

$50

Monica Martinez

$50

Teirney Dunnigan

$50

Amber Travers

$50

Janella Strathman

$50

Janella Strathman

$50

Bobby Joe Sumpter

$50

Rufus Bufford

$50

Donated by Brandy Ard Rodrigue, Michelle Sebok, Crystal Bradfield + Nicole Roche Nicols

$50

Donated by Trina Change

$66

Donated by Breege Murphy Hoyne

$50

Donated by Michele Thompson Jacobs

$60

Cassandra Stahike, Angie Rodkey, + Brenda Wallace Howard

$66

Trick’s Gareth

$50

Kelly H. Spell

$60

Tori Moon Ledbetter, Amber Hockersmith + Angie Malcom

$50

Cody Webb

$50

Sudipta Roy

$66

Donated by Bettina and family

$75

Donated by Team Arthur

$66

Donated by Trevor and Katherine Palin

$66

Donated by Lesley Rothwell

$66

Donated by Emma Coley

$66

Donated by Team Arthur

$66

Donated by Liz Hollard

$65

Donated by Lilly KS, Shandi G, Donna B and Julie Ann T

$50

Donated by Swarm for NKH

$50

Donated by Swarm for NKH

$50

Donated by Swarm for NKH

$50

Donated by Swarm for NKH

$50

Donated by Swarm for NKH

$50

Donated by Swarm for NKH

$50

Donated by Swarm for NKH

$50

Donated by Swarm for NKH

$75

Donated by Swarm for NKH

$57

Donated by Cassie England + Christine Bell

$52

Donated by Emma Price + Andrew Day

$66

Donated by Dan, Bex + Wilf Chaffelson

$50

Donated by Anna Henry Powell

$50

Donated by Laura McGuinness

$50

Donated by Linda Holm Nielsen

$50

Donated by Linda Holm Nielsen

$66

Donated by Wendy Hulance and Hugh Nicolson

$59

Donated by Angela Quimeyer + Philippa W

$66

Donated by Liz

$50

Donated by Team Arthur + Gemma

$50

Donated by Team Arthur + Gemma

$50

Donated by Team Arthur + Gemma

$50

Donated by Team Arthur + Gemma

$50

Donated by Team Arthur + Gemma

$66

Donated by Kristin, David + Alex

$66

Donated by Luke + Fenix Edwin

$70

Donated by Tina Tanner Webb, Anon + Amanda Kano

Is this your square?

Will you donate to keep Dr Van Hove’s lab open? Every cent helps.

Donate $50, turn the grid blue!

Help Save Prof. Van Hoves lab! Every single cent helps!

 

FAQ

What if I don’t have $50?

Fair call, not everyone has an extra $50 to donate. We understand. So instead, we’re asking you to run a lotto game. It’s very simple, low effort, fast and will raise enough for your $50 donation.

  1. Find out when your next lottery game is and how many balls there (in the UK the National Lottery has is 
1 – 59, in the USA, the Powerball Lottery has 1 – 69).
  2. Create a post on Facebook, and/or by email at work with a list of numbers, 1 to the number of balls in your lottery. Each entry is $2 for a number.
  3. The prize is split half half. Half goes to the winner, half goes towards your donation.
  4. The winning number is the first number called in the next lotto game after all the numbers are taken and paid for.

If you’d like an example, this was ran twice by Charlene, of Arthurs Adventure with NKH with great success. You can view the post here

I’m not into gambling. How else can I raise $50?

Because the bar is so low (just $50), you could:

  • Run a bake sale at work, or outside your child’s school – $2 a slice.
  • You could have a pizza making evening with your family and friends, and ask for a $5 donation for the night.
  • Give up your Starbucks for the month (at $3 for a coffee a day, you’ll have $51 in 17 days)
  • Run an Arm-wrestling competition (or ping pong or pool…) with a $5 entry fee. You’ll need 10 people to enter, and you’re sorted.
  • Run a coffee morning at your work, school or church.

Where do the funds go?

In the UK the funds go to Joseph’s Goal, where they will be sent across to Prof. Van Hove directly. If you have any questions about Joseph’s Goal, you can talk to Emma Kendrick. In the US, the funds are going to Swarm for NKH, and then onto Prof. Van Hove. If you have any questions about Swarm for NKH, please talk to Kami Westie.

Are there any transaction fees?

There no transaction fees. The UK Donations are collected on the BT My Donate platform, where BT generously covers the transaction fees. They also take care of gift-aid, allowing the tax to be reclaimed and sent across too.

The donations in the US are by Facebook, who also graciously take care of the transaction fees.

Wait. Why has Prof. Van Hove run out of funding?

This is a tricky question. Prof. Van Hove has had a very difficult year personally. We all know what that is like, when you’re dealing with terminal illness and bereavement – it’s tough. As families of NKH kids, we know what that’s like – that’s the life we live.

Essentially, there is not enough funding done by the NKH community to support three researchers, so the bulk of funding comes from grants. Grant applications take time and require pre-clinical trials and papers published in the last year. If you’ve had a hard year and have not been able to publish papers your chances of receiving a grant are severely diminished.

As such, the grants Van Hove was hoping to receive did not come through. The next grant application (one paired with Prof. Nick Greene in London) has results out in early 2019.

What is the plan? $10k isn’t enough for a lab to survive on.

No, no it’s not. Both Joseph’s Goal and NKH Crusaders have a small grants set aside for Prof. Van Hove. However, as this is not enough to fund a full year, they are in conversations with the University of Colorado to explore fund matching. With fund matching (fingers crossed) that leaves Prof. Van Hove short by $20k. If we can raise the extra $10k (an ambitious goal) and it’s matched, we’ve made up the shortfall. It would mean survival till another grant can be achieved.

How would Prof. Van Hove spend the money?

Running his lab. Essentially this means keeping the mouse model alive (mouse maintenance costs and costs associated with breeding, because mice with NKH don’t live as long we’d like them to), the salary for his post grad assistant who cares for the mice and supports Van Hove with analysis and grant writing, as well as support getting the MRI Imaging paper published, the natural history study underway (as pre-clinical grant support) and if all goes well and a grant comes through, support to explore the possibility of his the Chaperone Therapy ‘hit’ drugs (drugs that have the potential to stabilise NKH proteins.

Why should I support Prof. Van Hove?

Simply put, in his head is the greatest medical knowledge on NKH. He has spent over 15 years researching NKH. There is no person living who has his knowledge of NKH, which has been acknowledged by his peers in the field (such a Prof. Nick Greene). Additionally:

  • He is the leading specialist on NKH. He’s the person our metabolic consultants consult with. He’s the person all NKH Researchers meet with when beginning their NKH research.
  • Prof. Van Hove discovered variant NKH and why it’s different from classic NKH, clarifying the confusion around NKH presentation in line with the genetic abnormalities.
  • Prof. Can Hove is cited in almost every NKH research paper that’s been written in the last 10 years.
  • Prof. Van Hove is the lynch pin of a huge metabolic network, thanks to his work on the board of the Society for Inherited Metabolic Diseases, the editorial Board of the Journal of Inherited Metabolic Diseases and his collaborative efforts in his own research across the years.
  • He makes time for NKH parents. He visits conferences, takes photos, discusses our kids. He emails our consultants and looks at our kids scans.
  • He does lectures at medical universities across the world, introducing NKH.
  • Because he cares. NKH is his passion and main focus. He’s not split between Niemann–Pick C AND Malaria projects like Notre Dame is, or working on NTD’s like the team at UCL. NKH is his absolute and sole focus.
  • By running sibling studies in attenuated children, he proved that SB + DXM have a positive outcome with kids with NKH
  • With his imaging study, he was able to prove NKH inhibits growth in the brain (rather than causing a formation problem). This is very positive for future research and treatment.
  • Is the leading researcher in NKH Chaperone Therapy. Chaperone therapy treatment could improve the severity of up to 60% of the NKH population, drastically improving quality of life. (He’s closer than Notre Dame, which don’t yet have a stable mouse model).
  • Prof. Van Hove\s research has essentially defined how NKH is diagnosed in the modern world. It’s his research that has made liver biopsies obsolete for diagnosis.
  • Prof. Van Hove has approximately 5 years before he retires – he is more determined than anyone to find a working treatment in that time. He has the fire and the urgency no other researcher has.

Because at the heart of it, we would be remiss as a community not to support the researcher who has laid down the foundation for NKH Research for the last 15 years for the benefit of other researchers, for our children, our future children and our grandchildren. To save other family members the heartache we carry.