Melissa Hieger

Rare mom (DDX3X is my favorite gene), finance. mhieger.bsky

[Melissa Hieger @HiegerM]

@TracyDixonSalaz I’m so sorry for your loss.

[Brian Krassenstein @krassenstein]

A Message to Elon Musk @elonmusk and DOGE from a Mother of a boy named Max.

Please at least give it a read and reconsider haphazardly freezing funding on important government programs:

"Elon, this perfect little boy is my son Max. He's not a parasite. He's pure joy. Love radiates from him, and he has a smile for everyone he meets. He was born with a rare genetic form of leukodystrophy called TBCD that is usually fatal by five years of age.

We were filled with hope when the researcher our patient advocacy group has been working with at Nationwide Children's Hospital was awarded with an R01 grant from the NIH after our community pooled our resources to fund the first phase of her research to apply for it. Last year, she showed us some of her work in the lab that PROVED there was a pathway to a treatment.

It was just a few cells in a dish. My son's neural cells -- cured.

Right now, her funds are frozen. The grant that was providing hope for a future for these children with a condition so rare that private pharma would never have any interest in creating a treatment is what you're fighting to slash funding for. You might as well be slashing my kid's throat.

Any delay in bringing this from the bench to the bedside WILL kill children in our community - and you're laughing on X and calling them parasites?

Shame on you."

[Melissa Hieger @HiegerM]

@DeRubeisLab @DierdorffLauren @GradSchoolSinai @Tulane @SeaverAutism @SinaiBrain @MountSinaiPsych Rock stars. Every single one of you!

[Melissa Hieger @HiegerM]

@AnnabelMonaghan Norma Jean

[Melissa Hieger @HiegerM]

@SeaverAutism Love this work. Terrible it is behind a paywall. I would love to share this information with my child's medical team.

[Alison Singer @alisonsinger]

If those who purport to represent and speak for the full autism spectrum need a trigger warning and can’t even observe, for a few seconds, the daily behaviors many with profound autism experience, how can they advocate for their needs? https://t.co/jMrAwYH0DQ

[Luke Rosen @lukebrosen]

The Supreme Court’s Decision: Impact on the Rare Genetic Disease Community
https://t.co/lFlCspk4pL

[Melissa Hieger @HiegerM]

@fam177a1mamma Often the paper will list an email address. When I have reached out in the past they have responded without fail. This is a very kind and caring profession.

[The DDX3X Foundation @ddx3x]

We love seeing stories like this! Thank you to everyone in our community who is working hard to spread awareness https://t.co/fVGA9uJ7Pe

[Melissa Hieger @HiegerM]

@TherapyMomK This is such a beautiful piece and describes our journey perfectly. 💜💜

[Steve Earle @SteveEarle]

We’re pleased to announce the 7th Annual John Henry’s Friends Benefit on December 13th @ The Town Hall. Featured performances include Steve Earle & The Dukes, Bruce Springsteen, Rosanne Cash, The Mastersons, Willie Nile, & Matt Savage. Click to learn more: https://t.co/daApCyl0sz

[Rare Diseases Clinical Research Network @rarediseasesnet]

New study led by @ncats_nih_gov indicates health care costs for people with a #RareDisease have been underestimated and are three to five times greater than the costs for people without a rare disease: https://t.co/dh4Ko49cwh

[Melissa Hieger @HiegerM]

@DeRubeisLab Thank you for an awesome presentation. Your team has done some really wonderful work!

[Melissa Hieger @HiegerM]

@jennrein It is, indeed!

[Josh Ritter @joshritter]

Hi everyone! Excited to join my friends @Steveearle, @JasonIsbell, @EmmylouSongbird and more for the 6th annual John Henry's Friends benefit concert to raise funds for children diagnosed with autism on 12/13! RSVP & make a donation here: https://t.co/wOaMsvd1hv

[Steve Earle @SteveEarle]

We've added a new experience to bid on in support of The Keswell School. Head to the auction page on the Charitybuzz website for a chance to win tickets to any show at City Winery, a VinoFile membership & more.

All auction items can be found here: https://t.co/H7RONWxePZ

[Jackson Browne @JacksonBrowne]

Jackson joins @Luckreunion, @citywinerynyc and @Steveearle TOMORROW for the first ever virtual John Henry's Friends benefit concert for the Keswell school, which provides educational, therapeutic and supportive services for children diagnosed with ASD. https://t.co/FVVmo5PE0s

[Emmylou Harris @EmmylouSongbird]

Tonight! Join Emmylou, @SteveEarle, @LuckReunion, @CityWineryNYC and friends for the 6th annual (and first virtual!) John Henry's Friends benefit concert to raise funds for children diagnosed with autism. Proceeds benefit the Keswell School. Tune in/RSVP: https://t.co/v8Bex3nZIW

[Melissa Hieger @HiegerM]

@TracyDixonSalaz Congratulations! They are lucky to have you.

[Melissa Hieger @HiegerM]

@rasessionii Congratulations #TeamTaysha!